Tyler's Journey

Testing for LD

2011-12-02T12:36:00.000-08:00

So Tyler struggles in reading, math and handwriting in school. Finally this school year we have decided to get him tested for learning disabilities. I think there is a good chance he does have one just based on his past history and his CP diagnosis. Testing won't start until January and then we will meet up in Feb to go over results and create a plan. I know this sounds horrible but I pray they find something that will qualify him to receive help. We have done all we can do at home and the material is just not fully sinking in so he needs more help at school. I do not know much about learning disabilities so I've got some research ahead of me. He is still in speech therapy and progressing quite well.

Hope everyone is having a wonderful holiday season. While this is a hard time of year for our family as some family members are not with us anymore, I hope to help create new happy memories and to carry on traditions. One newer tradtition for our family for the past 2 years is a book called The Elf on the Shelf and this year there was a tv program which really made the story come to life for us. Our elf's name is Fred and I love the excitement Tyler has each morning as he finds Fred hiding in a new spot. Traditions are such an important thing to me and I love to pass them on in my family.

Merry Christmas and Happy New Year!

Update- November 2011

2011-11-25T18:27:00.000-08:00

I know it has been um, 3 months since I've posted an update.

Tyler just had his like 10th set of ear tubes placed last week. He is struggling with math and reading at school so we are meeting next week to discuss some further testing to get him some additional help at school. I gather there is a good chance he might have a learning disability. It would not surprise me if he does because it was to be expected based on his brain damage from birth. In all actuality he is doing remarkably well. He caught up on many of his developmental delays he had his first 4 years of life and now to switch over to a possible learning disability is huge improvement in my opinion. This month marks the 3rd year for having his cecostomy and I have to say his bowel is working great just as long as we stay on track with the flushing.

So far this school year Tyler has continued to enjoy the art aspect of school. I don't think he will be doing much performing this year besides the christmas thing each class does. Performing is just not his nitch, I think visual arts is. Looks like some of the art gene in my side of the family(his mom) has been passed down to him. I know I am definitely looking forward to what the future has instore for him.

Now the picture above was made by me but Tyler helped me take a picture of it. If he had more patience he would be able to make one too. Maybe I will let him create his own melted crayon art too.

Let 3rd grade begin

2011-08-24T19:52:00.000-07:00

So we are almost 3 weeks into the 3rd grade and wow is it so different from the previous years. A lot more is expected from the students. Every couple of months we have a friday off in which each student is expected to do what they call Field Study. Now this is not new to us and is easy to accomplish with an educational field trip or community service but now he is required to write up a 3 paragraph report on what he did and it is due on Monday, which leaves only the weekend to accomplish. Wow for Tyler this is going to be a challenge. Handwriting is not a strength for him, neither is spelling. We shall find out we have our 1st one coming up September 2nd.

Homework is different this year too, it is assigned daily instead of weekly. It is consistently 3 pages each day 4 days a week (spelling,reading and math). So far the math has been a huge problem, he is just not understanding the concepts. I hope to talk with his teacher about how to problem solve this. Maybe soon it is time to get him tested for additional learning disabilities.

On the health side things are going really good. Well the only problem we continue to have is his ears and hearing. Next month he goes back in for hearing testing and to see where to go from here. I really worry that all those sets of tubes has left some form of damage to his ears. If his doctor recommends yet another set I am going to want another opinion. I've lost count now but seriously I think he has had 8 sets of ear tubes in his 8 years of life already. Technically that is just in 6 years because he didn't get his first set until he was almost 2 years due to bad doctors refusing to help us.

I'll keep you posted but I hope 3rd grade doesn't turn out to be as hard as it is starting out! But overall he really likes his teacher and she seems like a great one, I know I hand selected her at the end of 2nd grade.

Long Overdue Update

2011-07-08T14:50:00.000-07:00

Wow I just realized I have not put any updates on my blog since April. Things are going great for us. Tyler finished 2nd grade and will be going into 3rd grade in mid August. He still struggles but continues to make strides forward in his academic success.

At the end of June Tyler turned 8 years old. He had a fantastic party at home with a group of boys from his school and the neighborhood. I think it will be his most memorable birthday party. We had a Mad Scientist come and do experiments with the kids and it was a blast. I highly recommend others to look into a Mad Science party too, it was just so entertaining for everyone.

Now that school is out Tyler has enjoyed going to see movies like Cars 2 and Transformers. We also go to the park and go swimming too. Summer is just flying by and with just 4 weeks left he will soon go back to school.

Things have never been better health wise. Tyler still has some struggles with his hearing and few little minor mishaps but overall he is very healthy and doing great! Enjoy your summer and if you don't hear from me soon it is because we are just having fun.

Back from vacation

2011-04-22T10:39:00.000-07:00

Sorry for not updating in a while but things are going great healthwise for Tyler. (Despite today him having a tummy bug). He is doing great in school and has made huge progress in getting upto grade level in reading and math. We recently had his annual school meeting and he is doing so well in speech therapy that he will be going only once a week for 30 minutes next school year. He just loves school and has become quite the social butterfly and chatterbox lately.

It is near the end of our spring break and we just got back from our short vacation from San Diego. Tyler has never been to San Diego and the rest of us have not been there in over 11 years. We decided to stay near the ocean. The hotel was great, it had lots to do like a free arcade room and a private beach on the Bay.

We had lots of fun on our short trip. We first visited the USS Midway Museum and learned a lot about what life what like for the military on the ship. Tight quarters and lots of steps no thank you for me! Then we hung out on Mission Beach and made sand castles and looked for shells. The beach is really where Tyler is in his element, he just loves to dig and explore. Next we went to San Diego Zoo, wow now that place has changed. Tyler was surprised how big that zoo is and how many animals there was. He enjoyed the skytram and the bus ride around the park. And ofcorse we had to ride the Balboa train just outside the zoo & just ask Tyler about that ride the lady was honking the horn at all the wrong times! On our last day we went to a beach in LaJolla called Children's Pool which used to be for kids but is now taken over by seals. It is amazing just to watch the seals and the waves. We also went to Belmont Park, which is an amusement park right on Mission Beach and they also have the Wave House there too. The Wave House is an artificial wave machine for people to learn to surf or practice that was fun to watch.

Overall we had a fun and busy time on our spring break. Now we've just got another month or so left of school and then it is summer break! Wow I can't believe I almost have an 8 year old who is soon gonna be a 3rd grader.

video

2011-03-04T09:00:00.000-08:00

for some reason the video or pictures did not get attached to my last message:

here is a link to the video:
click here for the video

Fairytale museum & new puppy

2011-03-04T08:34:00.000-08:00

Well sorry I have not updated since January but we have been busy with school projects and a new puppy. We ended up getting a 3 month old mini australian Shepard. His name is Teddy,sometimes you will also hear us call him Teddy Bear. At first Tyler was extremely scared of the puppy even when we went to visit him but we bought him anyways. After about a week Tyler finally came around and started to touch the puppy. Now the puppy is his best bud.

The other day was fairytale day museum at school. This year I planned way ahead and back in October I got a discounted Peter Pan costume. I figured it can be used for Peter Pan, Robin hood or another woodsy outdoor character so we should get some good use out of it. We have watched Peter Pan movie, read books and saw plays with him in it so Tyler liked the idea of acting the story of Peter Pan. Dad drew out his background and Tyler and I worked together to paint it. Tyler created his own lines with minimal help and they are short in sweet. He did an amazing job and you can hear how his speech has improved over the years.

I just want to assure you Tyler is doing great health wise and is doing fantastic in school! We are hoping to take a beach trip in April but that is still a maybe it all depends on if the gas prices level out soon. Well onto March!

Sadness to Happiness

2011-01-26T10:12:00.001-08:00

Well a lot has gone on with our family in the past month. My grandfather John passed away a week before christmas. Then my husbands grandmother passed in the middle of January and then our beloved dog Joey injured his knee and had surgery but sadly he is no longer with us because he died suddenly unrelated to the surgery. As you can see there has been a lot of heartache and sadness in our lives this past month. Tyler has taken almost all the news well. He knows grandma May and great grandpa John are in heaven with Jesus and God but their body remains here on earth. Now with the dog passing so suddenly this hit him much harder. He didn't believe me at first when I shared the news with him, then he was angry because he thought we put him to sleep (he was thinking of what happened a year earlier to our dog Daisy who had cancer & was suffering in pain) and he cried. It has only been a week and he seems to be ok and understands most of it. Our home and hearts are empty missing our loved ones.

We had planned to go on a cruise months prior to all the sadness and I wasn't sure if it was ok to go just after all this happened. We decided since the kids were looking forward to this mini vacay that we should just go ahead and go for it. We flew down to Los Angeles and then got aboard the Disney Wonder Cruise ship. It was a short 2 day weekend cruise called "The Cruise to Nowhere". It did just that sailed away in the ocean for a day and then went back to the port. It was a perfect way for us 1st timers.

Tyler did ok on the boat. I am not sure if it was the stress from before or that he is recovering from a cold but he didn't want to do much of anything and was really grumpy. They have a fantastic kids program with all kinds of hands on activities planned and they said it was ok that Andy stayed with Tyler but Tyler refused to stay. He just wanted to be with us the entire time. He did enjoy the pool and he played table tennis with Andy. Their game of table tennis looked more like Andy served the ball and Tyler go fetch it and serve it back. We played bingo but it was very crowded and noisy in there and Tyler had his hands over his ears most of the time. One thing Tyler did really enjoy was the live theater shows. I am not sure cruising is the thing for Tyler maybe we might try again when he is much older. It made me realize how much he still has issues with his sensory processing disorder. He still has some anxiety around crowds and noisy situations and often wants to retreat to the room for some quiet.

On our way back we decided to pass the time at Venice beach. Lots of people walking dogs and that was also very hard for Tyler but he did well. The beach was a great place for Tyler. He enjoyed playing in the sand, running from the waves and what he calls "surfing". He definitely felt more relaxed at the beach than he had been all weekend. Next vacation will definitely include some beach time.

To see some pictures of out trip follow this link http://picasaweb.google.com/AJBerchielli/DisneyWonderTrip?authkey=Gv1sRgCMeKr_-DxraQPQ&feat=directlink

New Year 2011

2011-01-02T16:50:00.000-08:00

Sorry that it has been so long since my last update but I can assure you everything is going great for Tyler. His health has been the best lately then it has been in years. This month marks his 3rd anniversary since his diagnosis of Hirschsprung's Disease and his first surgery. So much has happened in 3 years. Some other good news to report he has even gained some weight over the last 6 months, as of last week he was at 48 pounds. Still a tiny or skinny little guy but definitely gaining weight. It definitely shows that having to take gluten,dairy and soy from his diet has not affected him gaining weight.

Soon Tyler will work on his Pinewood Derby car for cub scouts and race it on the 15th. Then he is going to be a tree in his class production of The Junglebook. At the end of the month we will be taking our first mini vacation of 2011 (and actually a first time experience for all of us as well). We are going down to los angeles to welcome the Disney Cruiseline to the west coast with a 2 day Cruise to Nowhere. We are all excited and looking forward to some fun adventures.

Happy New Year Everyone!

All I want for xmas is my.....

2010-11-22T10:42:00.000-08:00

Two front teeth.....

Yes finally he lost his other tooth and it looks like his christmas wish of his teeth growing in will soon be here.

Thriller Dancing

2010-11-04T08:48:00.001-07:00

Tyler goes to a creative arts charter school and this quarter he had the opportunity to take dance. This was not your typical dance class, this dance class was specifically to learn how to dance the Thriller by Michael Jackson. It has been fun and exciting for all the kids to learn the dance moves and transform into zombies. Last week before their fox 40 news performance they did a practice run for the parents in the studio. You can view the video I made below:

Tyler is to the left of screen, 2nd row with a tshirt that has a W on it.
http://www.youtube.com/watch?v=BcCFeyJJZd4/a>

Missing Tooth

2010-10-23T16:23:00.000-07:00

Just wanted to share Tyler finally lost one of his loose front teeth. Now we are just waiting for the other one to fall out any day now.

Vacation Fun

2010-09-13T14:58:00.000-07:00

Well our family just got back from a little vacation to Disneyland. Tyler had a great time and the highlight of the trip was when he got picked to go on stage and fight Darth Vador. I am sure it is something he will always remember. I read somewhere that having a sign and wearing a star wars t-shirt gets the attention to get chosen. He was the 1st kid picked and brought a smile to the Jedi Master's face!

He had a lot of anxiety issues with people,rides and waiting in lines (actually a lot more than normally), thankfully Disney gave him a special pass to accommodate him. Overall we all had a great time and look forward to going back maybe next year since we still didn't get a chance to see everything.

Here is a short video of him fighting darth vador:
http://www.youtube.com/watch?v=mwV0rTUfEXY

New Doctor update

2010-08-24T09:55:00.000-07:00

Well yesterday we traveled to Dr Allshouse's satellite office about an hour and a half away. The drive there and back wasn't too bad, however due to the long day Tyler had to miss the entire day of school. I had an x-ray taken here at home and brought the films with us. At first glance I thought it did not look good but what I thought I saw ended up being gas. He still had some stool in the colon but the doctor said it didn't look too bad. He would like us to increase the castile soap in the flush to give that extra push his colon might need.

Overall both Tyler and I really liked Dr Allshouse. Tyler was happy the entire appointment and even asked a question he had about his button, he wasn't shy at all. Dr Allshouse really took his time with us answering my questions, going over medical history and explaining things to me. We never felt rushed in the appointment and it was a great visit. By the time the appointment was over I realized he spent about an hour with us which is great and unlike what most doctors would do for patients. I am very happy with him and I know Tyler's care will be in good hands.

Next follow up is in 3 to 6 months which we might end up having to go to his regular office which is a 3 hour drive one way. I am gonna try to schedule that during a school break so Tyler doesn't have to miss school if possible.

Changes with Time

2010-08-19T14:10:00.000-07:00

Well first off 2nd grade is going great for Tyler. He has really grown up since 1st grade and more confidence in himself. He just recently tried out for the school Drama Troop so we will see if acting is in his future.

He has recovered great from his tonsil surgery. He bounced back fast, considering it was only 2 weeks ago. He is sleeping much better at night and no more snoring thus far. He wakes up in a good mood and ready to start the day.

Some sad news now......our favorite doctor, Dr Robert Gates, has decided to take a position on the East coast. We are very sad to learn this news just shortly after we came back from Tucson but ironically we met his replacement while at the conference. Dr Gates had been talking about Tyler's care being transferred to Dr Michael Allshouse. I am so happy Tyler is being left in good hands as Dr Allshouse specializes in bowel disorders and bowel management. That being said we will soon know what it is like to travel for medical care. Unfortunately the new doctor is a 3 hour drive from our home. We hope that our first visit on 8/23/10 that all other non-urgent care can be managed by email and phone calls. It is exciting and scary all at the same time. I have full confidence that God set it up this way and has a plan. Dr. Gates is such an awesome man and is in contact often with Dr. Allshouse and has mentioned he would by available via phone should any questions arise. But watch out Dr Allshouse, Dr Gates has spoiled our family too much over the past 2 years!

Tonsil Update

2010-08-07T18:23:00.001-07:00

Just wanted to give a quick update. On Tuesday, 8/3, Tyler had his tonsils removed and new ear tubes placed. He seems to be recovering quite nicely from it all. He also has both top front teeth loose as well. Just intime because school starts on 8/12. Here we come to 2nd grade!

Home from Tucson

2010-07-27T11:05:00.000-07:00

We made it home from Tucson,AZ last night. Our family had a great time in AZ and at the pull thru network conference. I was impressed that this year Tyler stayed in the playroom and actually enjoyed being in there most of the time. He had fun with the other kids, especially a little boy named Benji. During mealtimes Tyler and Benji chased eachother around the room. The chef at the Hilton El Conquistador did amazing at making safe meals for us and it tasted great too. On Sunday we went to the Reed Park Zoo and had a good time seeing the animals. The giraffe's got really close. It was a great experience for all of us and we looking forward to the next conference next year in Reno with UOAA.

Vacations

2010-07-14T11:17:00.000-07:00

Well vacation #1 complete. Tyler went with sister,dad & grandparents to Salem,OR for a train meet. (Mommy stayed home for R & R). The report from daddy was that Tyler did well on the long car trip; I guess his bladder has improved as they did not have to stop often to use the bathroom. They had lots of fun, despite the very hot weather. I hear the hotel pool was a popular spot for Tyler. Tyler got ahold of the video camera and started to create his own video with comments made by him about the trains at the meet. With some editing by Dad it is very cute.
In about a week we leave for our 2nd trip, another very hot place, Arizona. There we will meet up with new and old friends whom have conditions like or similar to Tyler's. This time Dad will stay behind for his R & R. We are looking forward to it. To learn more about the conference visit The Pull Thru Network

School starts in about a month, yeah for 2nd grade! Tyler is scheduled for his tonsil removal on August 3rd, so please keep him in your thoughts and prayers for a speedy recovery.

Have a great summer everyone!

Follow this link to view the video
http://www.youtube.com/watch?v=cd6lyeFbMVA/a>

He is officially 7

2010-06-29T09:01:00.000-07:00

Yesterday, June 28th, Tyler officially turned 7 years old! Wow, the time the past 7 years has just flown by fast. We had a small party with family, since he already had a party with friends earlier in the month. He got some great gifts & it is so funny to see his face light up with excitement opening each one.

Not too much to report, health wise he is doing great. We will be going to the ear doctor today to get a look at his tonsils (there is a good chance they will need to come out). Later this week we are just doing some routine testing for any seizure activity, it is called an EEG. This will be a 24 hour test but the good part is after they get all the items attached to his head & wrap it we can go home and do our normal stuff and then come back the next day for them to take it off. I am curious what the test might reveal, as Tyler does not sleep well at night & often tosses and turns (the neurologist said this could be seizure activity). So please just think of him & pray the test will show us some answers as to his sleeping issues. If it is not seizures it could be some mild sleep apnea related to the enlarged tonsils. So either way I hope we can figure it out and solve the problem.

Tyler has 2 big trips planned for July. First he will be going to a train meet with Daddy & grandpa( and sister and grandma too) in Oregon. They are driving so this will be his first long car trip and longest time away from Mommy. I will be at home having some R & R time, as I do not travel well by car. Then later in July, Tyler, sister & Mommy will be flying to Arizona to go to our annual conference (Daddy will be staying home for his R & R). Then school starts up mid August for 2nd grade!

So please just pray for answers on the test results, doctor appts & safe travels for our family!

Neurologist Appt Check Up

2010-06-11T15:16:00.000-07:00

We saw a new neurologist today. Nothing was wrong with the old one he just stopped taking our insurance. My impressions- I ended up miscalculating my time and was there way early but they still took us back right at our appt time. We ended up waiting in the room for like 10-20 minutes but I think it was due to the patient in the room over who sounded very violent through the walls & the fact they were trying to find Tyler's MRI result from 2006.

Anyways. I really liked Dr . He was nice and polite and spent a long time with us...probably a good 45 minutes. He said Tyler is doing great & we both joked how he could be a poster child for early intervention. He did a pinwheel test for Tyler and while he did not have a seizure while we were there he was not thrilled with the results. So he wants him to do a 24 hr EEG. As long as the EEG is good then we are good to go with just a follow up late Fall.

One other thing he mentioned based on what I described about his sleeping habits he is quite confident Tyler may have sleep apnea. He took one look at his throat and said his tonsils were kissing. This was something I have been talking to the ENT about a few weeks ago but he was hesitant to remove them. So I think it must be time now.

So switching doctors was a good start. Atleast this time I know it will be much easier to get test results compared to the other neuro.

Schools Out for Summer!

2010-06-08T11:25:00.000-07:00

Yeah school is over and starting in mid August Tyler will be in 2nd grade. He made huge progress this school year but still has a way to go. Hopefully we will be able to find a reading tutor to help him this summer so that he doesn't fall too far behind in that area.

Since Tyler will be turning 7 at the end of June we decided to have an Un-Birthday Party with friends from school. We had it at our local pool and had a great turn out of friends for it being on a weekday. I make a cake that looked like s snorkler boy all out of cupcakes. I think I did a great job & everyone made so many nice comments on how they liked it and how good it tasted. It was gluten,milk and soy free of corse.

Tyler is enjoying all his wonderful gifts. He got his 1st slip and slide & all the kids on the court are having fun with him!

It has been a great year & I think we are all looking forward to the next one.

Things are going good!

2010-05-14T21:14:00.000-07:00

Wow a whole month has past since my last update. Well no news is good news folks! Things have been going great in all areas of life for Tyler.

We had Tyler's annual IEP for the next school year. He will be getting speech twice a week, 30 minutes each next year. Part of that time will be in the classroom with the speech teacher and then the rest will be out of the classroom 1:1 and also in a small group setting practicing sounds. The speech teacher is impressed with his improvements over this school year. He still has a few speech issues to accomplish but overall people can understand what he says. She is fairly confident that if the progress continues he might not need speech therapy anymore come 3rd or 4th grade.

Academically he is doing great as well. His reading has improved and he is almost at grade level for 1st grade. Thank goodness for an awesome teacher who held a weekly afterschool reading group to help Tyler and a few other students to catch up on their reading levels.

He is excited to become a 2nd grader come August. Looking forward to the new adventure with a new teacher. Just a few weeks left of school and summer vacation starts. Looking forward to our summer trips we have planned.

Ear Update

2010-04-09T08:36:00.000-07:00

Just wanted to update everyone on Tyler's ears. Well it has been a week since his surgery and he is doing great. He can finally hear again! Now we have to be careful what we say because he can hear everything now!

Ear Tubes this week

2010-03-29T20:19:00.000-07:00

Tyler's hearing has gotten worse over the last few weeks with all the fluid in his ears. He even got an ear infection that has taken both ear drop and oral antibiotics to get rid of it (I am not sure it is completely gone yet either). He has also had this virus that left him with a nasty cough which is going on 4 weeks now. This thursday April 1st he is scheduled for his ear tube surgery finally. Please pray that they feel he is healthy enough with his cough and ear infection to go forward with the tube surgery.

Our family normally takes a vacation on spring break but this year because it was the only time we could get the surgery scheduled we decided to take a short mini vacay. We went to Six Flags Discovery Kingdom which is within a 1 hr drive from home. Technically we can make it a day trip but we decided to stay overnight for more of the vacation feel. We had a great time. Tyler enjoyed seeing the animals and riding the kiddie rides (he is like me and not at all interested in the coasters). He refused to touch or feed any animals except today he fed and touched the elephant. We were all shocked. Here are some pictures of the fun we had.

Fairytale Day- The Gingerbread MAN

2010-03-04T10:38:00.000-08:00

Every year the k-3 classes at Tyler's school do a fairytale day. In kinder each student picks a nursery rhyme. In 1st and 2nd each student is a different fairytale book character, and in 3rd grade the do group skits. The students needs to create a backdrop, dress up, say the lines of part of the story and be the character. Tyler chose to be the Gingerbread MAN and I capitalise MAN because Tyler says he is a Man not a Boy.

We all worked hard together on the backdrop. The story line came naturally to Tyler so that part was easy. And I worked very hard at creating a costume. Overall I say we did awesome. I peeked at the other classes and got some great ideas for next year too.

Here is Tyler's short video in character:
http://www.youtube.com/watch?v=Mh_t9kW1pLA

Ear Tubes onhold till April

2010-02-24T13:50:00.000-08:00

Well there was a mixup with our new insurance and we could not go to the surgery center we wanted to because they are out of network. So we switched back to the hospital outpatient surgery center and the next available is April 1st. Well if all goes well this is spring break that week so he will not miss any school.

Good thing I didn't make any out of town vacation plans for spring break like we normally do. We might go to Six flags for spring break but that is only an hour or so away.

Ear Tubes #7

2010-02-22T18:31:00.000-08:00

Well, Tyler did not full pass his hearing tests or exam for his ears. His tubes have fallen out in the last month and fluid has yet begun to build up again. So this means onto set #7 of bi-lateral Eustachian tubes. We got lucky and they have an opening for surgery this thursday and he is off school on friday so I am happy it will work out and he will only miss 1 day of school. Please say a prayer for Tyler this Thursday mid-morning. I know the surgery its-self is quick and easy but considering this is the 7th one I worry about the possibility of permanent damage from all the surgeries. He has also had some of the unpleasant side effects to anesthesia the last few outpatient procedures. We are also trying a new surgery center since the last few times we have had unpleasant experiences with staff there, I am hoping this one will be much better (this ear doctor does not do his surgeries at our hospital he does them at another location otherwise if it was at the hospital I would not be complaining).

Things seem to be going just great on the bowel side of things. The cecostomy has been so helpful to make it to this point. We just scheduled our flight to Tucson for July for the Pull Thru Network Conference , we are so looking forward to meeting up with new and old friends. There are several sessions that pertain to Tyler's dx that will be very informative for me. I highly recommend others attending this conference it is such a great way to learn new things and make the family connections.

2 years....today

2010-01-24T16:39:00.000-08:00

Today marks the 2 year anniversary that Tyler had his first of many surgeries & was finally given a diagnosis. I am so happy that the wonderful surgeon was on call that night. He has been a true blessing to our family. I just want to share a few pictures of Tyler's medical journey over the last 2 years. Currently, he is doing great with the help of his cecostomy.

Big Race Day!

2010-01-16T16:55:00.000-08:00

Today was the big race for the pinewood derby cars for Tyler's cub scout Pack. This is Tyler's first time and he did great. He got 1st place within his Den (which is the Tiger Cubs group) and he got 6th place over all in his Pack (which is all the boys from Tigers to Weeblos). He is so proud & so is Andy too. They worked so hard on his car which is adorable.

Here is a link to the video of his race:
http://www.youtube.com/watch?v=egk7n9t56CI

Welcome 2010

2010-01-03T15:37:00.000-08:00

It is a new year yeah. With this new year brings a new health plan to our family one that will open to doors of new doctors should any of us need them. Things seem to be going great right now medically for Tyler (knock on wood). So far we have not had any side effects from the new medication cream Tyler is on for his bladder.

Something exciting happened for Tyler...he lost his first tooth! He is so proud.

Happy New Year, yeah 2010!

Urologist Update

2009-12-17T15:34:00.001-08:00

Just wanted to update you on the 2nd opinion urologist appointment today. Well first off the guy sat infront of the computer typing away and didn't talk much. I told him the history of Tyler and he did an exam. He was actually surpised we had not come to see him first considering he is the peds urologist for the area and the other guy we saw was adults only. Right now he did agree with the other doctor that further testing was not needed because he empties his bladder & has not had any infections. His best guess was that Tyler has a very common frequent urination problem that happens in boys his age but typically resolves itself & they do not know what causes it. He is concerned that it has not resolved in Tyler and that Tyler's frequent urination and constipation issues are quite puzzling to him. So for now he would like to treat the frequent urination with a special low dose cream that we apply to Tyler's skin. He chose the cream over the pill because it has the lowest chance of having constipation side effects & Tyler got constipated so quickly from the pill in the past. He did admit he has not had but a few Hirschsprung kids come through his clinic in the 10 years he has been practicing.

We have a follow up in January with his office and meanwhile I hope the cream will work and Tyler will not get any of the side effects from it. They want me to get a few days of checking his stool output before we start the cream so we can have a baseline number. ++ thoughts & prayers would be great.

Janel

mom to:

Isabella(14), & Tyler(6)

http://tylerjourney.blogspot.com/

http://unlimitedthinking.blogspot.com/

December 2009 Updates

2009-12-09T16:16:00.000-08:00

Well things have finally settled with his tummy. He had tummy aches for nearly 3 weeks and then one day they were gone. The xrays are showing that things are looking rather good. So the conclusion the surgeon has is that maybe he had a tummy bug and it just took him longer to get rid of it. With kids with Hirschsprung's the common colds,flu and tummy bugs hit them harder and takes longer to recover from them. So for now the flushes seem to be working well to clean out his colon. We have an in office follow up closer to Christmas with our surgeon & he will also switch out his button. Technically I can switch the button out at home but sometimes it is just easier to have the doctor do it since we will be there anyways.

Next week he has his appt with the urologist on the 2nd opinion. Tyler is still having very frequent urination and now it seems to be waking him up at night to go too. I do hope he will be more helpful than the last guy.

Today we had our annual check up with the neurologist. Things are going well for the most part so it was an easy appt. I am concerned that I may have seem some seizure activity a month ago in the car. And I have always wondered if he might be having them in his sleep as well. He has not been sleeping well at night and always has trouble getting to sleep too. Without the melatonin before bed I doubt we would be able to get him to sleep at all. He agreed that it would be good to check it out so he is gonna see if he can order a take home EEG test. What I understand is we go to the hospital to get the leads placed and then we go home with a fanny pack and pug the leads in & from there it will record any seizure activity for the next 24 hrs. That way he doesn't have to stay overnight at the hospital and he can be in his own environment. Sadly come January with our insurance change means we can no longer see this neurologist but the new one I have chosen I have already gotten great reviews. And since we only typically go once a year I don't see it as a huge loss. So hopefully we can at least get the testing done before the new year & then the new guy can give us the results.

Ending on a happy note overall things are going well health wise for Tyler. He is excited and looking forward to Christmas. This was also his very first time that he was willing to see Santa & talk to him. It is so great to see his face light up with excitement. He is getting excited about 2 dance performances at school and then of coarse having more days off.

I will try my best to post another update after the urologist appt after the 12/18. If I don't get to it have a wonderful Christmas & Happy New year.

November 2009- School & Updates

2009-11-21T15:38:00.001-08:00

Wow November has just flown by so fast it is hard to believe it is almost over. For the most part this month has been great for Tyler. Last week his class had a special family thanksgiving lunch. This year due to the school district restrictions on homemade foods being shared at school we were not able to have our typical turkey feast. This was fine by me because Tyler can not participate in that without me preparing all the food due to his allergies. So the teacher and I came up with a plan the school lunch one day was a turkey dinner so that was gonna be our family party. The school cafeteria was so nice to allow Tyler the experience of a hot lunch. I prepared his food at home and then placed it on a tray for him to receive once he went through the line with everyone else. He was so excited to be part of the hot lunch line and get a tray like everyone else.

At school Tyler is struggling with reading and spelling. His teacher has been modifying his spelling and giving him some extra help in a small reading group after school. It has been very helpful but more help might be needed so we will be having a meeting with the school to see if more help can be given. Next week we follow up with the neurologist. When he first told us the news of Tyler's brain damage back 3 years ago he did say long term we don't know the affects until 1st or 2nd grade. So if it turns out that it is just a mild learning disability I say we are very fortunate. He still get speech therapy once a week and is doing great.

Tyler started Tiger cub scouts. Grandma Judy and Papa Augie are the den leaders. So far the den is small with just 4 boys but they are all excited to learn new things. He looks so adorable in his little uniform.

Tyler has been having some mild tummy aches, lots of tummy grumbles and a recent xray just revealed he has gas built up inside. Not sure what is going on but it doesn't seem to affect him that much day to day. We are awaiting his surgeon to review the xrays and let us know what the next step would be, if any.

Next month we have our 2nd opinion appointment with the urologist. I will be curious to see what his thoughts are on the still very frequent urination. Starting in January our new insurance takes affect and we will have a wider variety of specialist to see if need be. We will then be able to switch to this urologist if I agree with his opinions.

Dentist check up & halloween

2009-11-01T13:55:00.000-08:00

Tyler did amazing at dentist (cleaning,exam & xray with no tears) no cavities & he has 3 of his 6 yr old molars in. But when the lady started to talk about floride being painted on his teeth yellow he freaked out & refused. If they did the floride with the cleaning and he would have been fine, the word painting his teeth scared him. Dentist wants to put sealant on his molars for that Tyler will need valum for!

Tyler was into halloween and dressing up this year. The various events he attended this week he wore a different costume for each one. Spiderman, power ranger, Optimousprime & a knight all got their fair share of being worn. It was fun to see him so excited to dress up and go to carnivals. He went for the fun and getting a few pieces of candy was a bonus for him. He did realise that he did not get nearly as much candy as his sister (whom went trick o treating with friends) but he is very happy with what he got. And I am so proud that he knew what candy he could not have and almost all the time willingly gave it to dad or sister.

Some Good News

2009-10-15T10:38:00.000-07:00

After speaking without me giving great details about the urologist appointment the surgeon agrees that we are to have Tyler stay off the medication. Some great news, I contacted Tyler pediatrician office who handles referrals and she sent a referral to another peds only urologist that is out of network. Less than a week after my phone call my insurance approved for Tyler to get a 2nd opinion from this urologist. He has an appointment for dec. 1st. Now I just need to get urodynamics done and get copies of all previous testing so I can take it all to this doctor appointment. In the insurance world I think you only get 1 second opinion. Hoping this new doctor will have some idea of what the next steps should be involving his bladder.

Another good news is we have to switch health plans and with that change I believe this doctor will be in-network. But that doesn't take affect until January. I am so excited that our current plan is atleast paying for this one consult visit.

Meanwhile we are still working hard at keeping Tyler's colon clean and getting weekly xrays to check that progress. Things are improving but often they can turn around and change with little to no warning.

Fustrated

2009-10-05T17:44:00.001-07:00

UGH...I am completely frustrated. So Tyler has overactive bladder or something we don't exactally know because the urologist will not order a urodynamics study but all other tests have come out fine (VCUG, kidneys, etc). Anyways we decided to give detrol a 30 day trial. Well 2 weeks into it an x-ray revealed constipation and then Tyler got really sick like he had an impaction but we were able to work through it and stopped the Detrol for a few days. Then we started it back up and a week later which is today we had another x-ray and I do not have the docs view on it yet but to me it looks like constipation not as back as the one before.

Anyways I have the x-rays with me in hand to Tyler's appointment today with urologist. First off the man was behind due to surgeries, that is fine. Then when he gets there he spend all of 2 minutes with us does not even bother to look at the films and tells me well isn't your surgeon supposed to help take care of that. I said yes but I think the detrol is contributing to constipation. I proceeded to tell him the detrol is working but my co-pay is very expensive and we need to find another alternative if we are gonna continue with meds. He tried to tell me there are no other alternatives(baloney yes there are) and he gave me some samples but the samples are capsules not tablets so Tyler can't even take them and he said kinda like oh well that is what I have you can try the company to see if they have discounts.

The guy was a complete a$~ about it all. And he was so rushed to get out of the room most of the conversation was him standing at the doorway with the door open. No requests for a follow up or anything. It was a complete waste of our afternoon. So if anyone knows a peds urologist near Northern California please let me know I am def not going back to this guy!

September came and went

2009-10-02T09:38:00.000-07:00

I realise it has been almost an entire month since I have updated this blog and I apologise for that. Not too much has gone on this month except for last week. So Tyler started his detrol medication for overactive bladder and after a week it finally started to work for him. BUT then 2 weeks into the medication he stopped eating, complained of tummy pain and began to vomit. An x-ray showed he was constipated but not too severe that needed surgery or anything. So our surgeon suggested he go off the bladder meds for a few days till he was better. So he just started the bladder meds this week and next Monday he has an appointment with the urologist. I am gonna explain how he reacted which I am almost certain was the common side effect of the meds. While constipation is common with those meds it is NOT something good for Tyler and quickly could spiral downhill for him. I'll let you know next week how the appointment goes.

Urologist Appointment

2009-09-06T20:23:00.000-07:00

Ugh the urologist, I am not exactally thrilled with his response on friday. I actually had him talk to the surgeon on the phone while we where there and somehow they both agreed that we should trial meds. The medication is called Detrol LA (you can google it) but it is supposed to work for the problems Tyler is showing which is overactive bladder. My only resevation about this is one side effect is constipation and that is something we do not need more of. My husband and I discussed it and as long as the surgeon can monitor the colon end closely then we will try it for 1 month but if he gets constipated and the flush stops working that we are putting an end to that medication.

What I wanted from this appointment was the doctor to order the urodynmaics test but he refused because he said it was not necessary and all it would tell him is Tyler needs meds for his bladder spasims. This is odd because a year ago when we saw him he wanted to do the urodynmaics test but I wanted to hold off on it since Tyler had just had his cecostomy surgery.

He seems to be taking the meds just fine it is a tiny pill and he swallows it with a bite of applesauce but it is early to tell if he is having any of the side effects. so far after only 2 doses it doesn't seem to be helping at all but I know it probably takes time. I'll keep you posted on our progress.

we have Pee

2009-08-29T17:04:00.000-07:00

Odd title I know but finally he has made some progress,not much but a good start. This kid held his pee for more than 24+ hours. I have pumped him full of drinks today and popsicles he still played and jumped around all day like nothing was wrong. Finally this afternoon my husband decided to do his flush and low and behold while he was pushing his stool out he started to pee. I'm sure he hasn't emptied his bladder completely but this is a good start. We will deffinately be following up with further bladder testing with the urologist.

For now we just hope to continue to make progress in both the bowel and bladder.

Update- 8/29/09

2009-08-29T07:27:00.001-07:00

Well I think most of you know what has gone on with us the last 24 hrs but just to give an update more in detail of how our friday went. They were so busy and running behind on the schedule. We arrived to check in at 9:15am for our 11:15am surgery but didn't actually end up in surgery until 12:45pm. Surgery itself went fine the fecal impaction was all next to his cecostomy and the rest of the colon was clean. Since Tyler has been having issues with frequent urination the doctor wanted to get a fresh urine sample to send off to the lab. So they gave him a cathater just long enough to get a sample.

In recovery things were going great and we had already signed all the discharge papers,then he mentioned he had to pee. So the nurse took us to the potty and it was in there Tyler was screaming in the most extreme pain of his groin hurting. Well ofcorse that delayed us because then the nurse wanted him to stay longer until she could get ahold of the doctor. Well the doc had requested we stay a bit longer and encourage more fluids to get him to pee. Well that didn't work because then he began to vomit every time he got liquid. Well then because the outpatient center was getting ready to close the doctor had Tyler admitted upstairs to the peds unit for observation. Hours later more vomitting and several tries to go pee and still he did not have more than 1 drop. The doc came up to see him and told us as soon as there is pee we can go home. That didn't work and Tyler fell alseep. The doc came back up before he went home after 10pm and was confident that Tyler should go home and rest and very likely he will go pee in his own environment and to call him reguardless in the morning. Oh they did an ultrasound of his bladder and there wasn't much in there anyways.

So that is where we are now at home and still waiting for him to pee. He just drank a cup of juice so I am sure he will likely have to go very soon. If not we will likely go back to have his bladder drained.

So this just shows you how the simple procedures for kids like Tyler can often not be so simple.

OR Disimpaction scheduled for 8/28

2009-08-27T16:43:00.000-07:00

Well didn't want to alarm anyone but please keep Tyler in your prayers & thoughts for friday 8/28. He has been battling with constipation and frequent urination again. And 2 weeks ago we attempted to give a stronger flush at home to clean him out but it did not last very long because all the problems of the frequent urination came back. So we did an xray today and the results show his bowel is impacted so our only option is to go to the OR (opperating Room) for a disimpaction of his colon. It is just an outpatient procedure and we should be home by the afternoon. I'll post an update this weekend but please just keep him in your prayers.

First week of school & radio

2009-08-15T19:30:00.000-07:00

Above is a small slideshow with the radio-a-thon from KNCI from August 7th. For my email buddies you can go to this link to see the video:
http://www.youtube.com/watch?v=A3znO9_zWlM

Well the first week of school started off with a bit of a scare of Tyler's bowels not working that great and an xray revealing all was not well. But the surgeon allowed us to try to flush his colon out with a stronger solution at home for a few days first before going to the OR. Well thursday's xray showed much improvement so we have managed to dodge the OR this time but it just shows you how quickly things can change with his colon and why we always have to keep an eye on it.

Tyler has been adapting well to being a 1st grader. He really enjoys school and so far this week has not shed a single tear and has separated from me easily. He has definately grown up and is much more mature now.

Back from New Orleans

2009-08-09T10:05:00.000-07:00

We just arrived last night from our New Orleans adventure. We had a great time visiting the aquarium, insectarium and the zoo. We met several kids and their families with different stages of Hirschsprung's Disease and they were all around the 5-9 yr old range. Tyler really enjoyed making new friends and swiming with his new friends in the pool. Tyler didn't want to stay in the playroom while I was at my conference meetings so I was so glad my mother in law came with us to be able to take him to the pool & keep him occupied in the meantime. Hopefully next year he willbe a bit more mature so he will stay and enteract with his friends in the playroom. They also had a giant colon on display you can crawl through co co the colossal colon

Besides the outings I think the most memorable experience for Tyler & myself was the dinner which was hosted by Convetec (a medical supplier). Tyler and a few of his new friends took over the dance floor & were just having so much fun. Tyler was such a ham and everytime a photographer came over he jumped right over there to make sure he was in the photo. At the dinner there was a live band playing New Orleans style music, something I think us from the west might call Dixie Jazz.

I have to say before this trip I was so worried about the food because of the food allergies we have. But overall I think we did ok. We found one place which I knew in advance had a special gluten free menu and I was very happy when I arrived the menu was onhand and the staff seemed well informed about gluten allergies. The waitress went over all the ingredients with me for the food we ordered. This was Bubba Gumps restraunt. I also packed a ton of snacks and other food too just incase and we did end up eating that alot too. We didn't venture too far from unfamiliar food,atleast for Tyler, so we mostly ate hot dogs, hamburgers and chicken for dinners & lunches and fresh fruit and eggs or cereal from home for breakfast. Overall I felt food wise we did good and none of us got sick from the food. Tyler is a little bit constipated but that could be due to the change in his typical routine and all the traveling.

Now to get back into the swing of theings at home and starting 1st grade in 3 days!

Trains & Travelin'

2009-08-02T15:16:00.000-07:00

Well Tyler, Dad & grandpa Augie went this past weekend to drive some real trains. They had loads of fun being engineers for an hour or so. Yes they really drove the train with the help of an engineer. Tyler enjoyed being able to make the train go and stop and blow the horn too! The boys sure do love trains if you don't already know by now!

This week Tyler & I are traveling from California to New Orleans,LA for a conference. We will get the chance to learn more about Tyler's condition and meet other families who have gone thrown simular surgeries as us. We are excited and nervious all at the same time. Please keep us in your thoughts & prayers for safe travels and great weather.

While we are gone Tyler's interview with the radio DJ will be aired this friday, August 7th during the radiothon for Make a Wish. I don't know the exact time but stay tuned between Pat & Tom's show between 5am-10am. Hopefully many of you will be able to hear it on 105.1 fm & make a small donation to Make a wish to help make another wish come true! You can also visit the DJs as they are live at the Galleria Mall on August 7 & 8. Make a Wish chose Tyler to be on their posters and promo flyers so I imagine they will have pictures up of him there.

catch up for July

2009-07-21T21:09:00.000-07:00

Oh boy I am behind, it has been almost an entire month since my last update on my blog. Well quite honestally nothing much is going on. Health and bowel wise things are going good for Tyler. He had his ear check up this week and the tubes look good and are still inplace doing there job but he still has a mild hearing loss. Nothing knew there I don't think he will outgrow that but atleast it is not that bad and he can still go on in life and hear.

In 2 weeks we will be on our way to New Orleans for our annual conference with the Pull Thru Network. I am so excited to be going again seeing old friends and meeting new ones and this time will be Tyler's first time going. Grandma Judy will also be coming with us to help us out. we've never been to New Orleans so it is gonna be quite the weather and culture shock for us.

Soon Tyler will be starting first grade so it is gonna be exciting around here.

Oh and this week we are going to a local radio station to do a taped radio interview about Tyler and his wish he recieved from Make a Wish. This radio station is having a radio thon to raise money for Make a Wish our local chapter but they are doing it the same time we will be at the conference. The DJ was so kind to call me and let us pre-record this. It is gonna be fun but I am looking forward to August!

6 years old!

2009-06-29T21:19:00.000-07:00

It's official Tyler is now 6 years old! His birthday was sunday 6/28 and where else would we celebrate this special day at....the train park ofcorse! Of corse it also was the first hottest day of the year topping at about 107+ degree day. But Dad had an awesome idea turn on the sprinklers,misters and fans to cool things off. It worked and with all the shade trees it was nearly 15 degrees cooler in the park. The kids enjoyed riding the trains and getting misted with the water dripping from the trees and the sprinklers. It turned out to be a fun party.

Today Tyler had a check up with the dentist and apparently things didn't go over well. I guess I should have planned it for a different day because he was not cooperative at all. Daddy said they were only able to look at his teeth but not clean them because Tyler was too upset and crying too much. So we will wait a couple of weeks and try again. The dentist did mention new molars came in since his last visit.

Tyler has had over the past two weeks lots of tummy troubles, nothing too major just some adjustments to his flush ended up being the solution to fix the problem. Also being more cautious that he does not eat any wheat or dairy products too. His reactions to these foods seem to be coming on faster, more painful for him and lasting longer everytime he eats something that has that in it. Basically the reactions he has when he eats gluten (wheat) and dairy is tummy aches, mild rashes, & overall upset to his colon. I mentioned in my last message his reaction to the milk in the cheetos he ate well this time he reacted just as strong if not stronger to some wheat that was in a fruit roll up that we were unaware of had wheat in them (he ate several of them over 2 days). So we will definitely be staying away from gluten and dairy for quite some time. That is ok because it is an easy thing to do and there are so many yummy alternatives.

I made Tyler's cake for his birthday (Andy decorated it) and it was so good none of the party guests could even tell it was a gluten and dairy free cake. Want my secret? Well I can't take all the credit it was a cake mix I got a Whole Foods and I used coconut milk and non dairy home made pudding in the mix which gave it the extra moisture that made it so yummy!

Growing Well

2009-06-15T14:03:00.000-07:00

We saw the GI today. I have to say I am impressed at how quickly we were in and out of there. Anyways she is impressed at how well Tyler is doing and how empty is colon feels. I mentioned to her how he has reacted to dairy and she mentioned well aren't all humans not supposed to have dairy & how humans are the only mammals that go from moms milk to a cow. So that was her way of saying she agrees with me that he is allergic to it. I had her re run the celiac test to see if his levels have changed in the past 2 years and she also is running a bunch of other labs because I told her I was concerned about how easy he bruises and that no other doctor has been concerned enough to look into it. Tyler has gained weight he is now 41 pounds and 42 inches tall so he is growing well. When we went to get the labs drawn Tyler had a really hard time with that and it took him over 2 hours to recover emotionally from it. We also talked about some of the different button options that might be available to us so we are gonna give the surgeon a call and see what his thoughts are on maybe switching to another button that is pretty flat to his skin.

Schools Out for Summer

2009-06-06T09:19:00.000-07:00

June 3rd was the last day for Tyler to be a kinder now he is a 1st grader. He is so excited to be going into first grade this mid August. His classroom was a k-1 combo class but next year it will only be a 1st grade class, so he will have the same teacher and same kids in the class. I think there is only 4 new students for next year, otherwise he already knows his classmates. His report card was great and he is doing very well in school.

This week it was looking like his mic-key button was too big so we went to the surgeon to see if he needed a smaller size. Sure enough he does but only slighlty smaller so the doctor placed a new one in of the same current size and wants us to see if that makes any improvements. Either way he told me to call him in a week and then we can order the smaller size if needed. It has only been 2 days and I deffinately think a smaller size will be needed.

Well I let Tyler eat a snack bag of cheetos, well that has turned out to be a big mistake. He has had a slight upset tummy, stool accidents and a rash from it. So this just proves that he is allergic to all forms of dairy, milk and cheese. No allergy test can prove me wrong when you do food trials and have reactions. I would like to do a food trial on wheat but I worry because that one blood test he had 2 years ago was inconclusive for celiac. I most deffinately do not want to cause any damage to his intestines nor do I want to give him wheat to make him sick just to confirm celiac by a doctor either. But it would be nice to occassionally let him have something at a party or something.

I just have to say I have heard so many horror stories about the schools not being accomidating to children with food allergies or celiac, well Tyler's teacher has been so the opposite. She is so sensitve to his dietary needs and actually has been reading up on his allergies and reads labels. She always checks with me before giving him any treats and parents have been great too. When it has come down to celebrating a birthday the parents are so sweet to try to see if Tyler can have something (mostly no but the thought is nice). I actually bring Tyler his own cupcake or cookie and he is happy with that. For class events I have been the one incharge of food and it has been easy to make sure things Tyler can not have are not brought into the classroom(mostof the time that is). I am so happy to work with the same teacher and most of the same parents next year, it just makes life eaiser. I hope all his future teachers will be so understanding and accomidating!

IEP update, trains & swimming

2009-05-17T21:25:00.000-07:00

Just wanted to let everyone know that Tyler's IEP with his school went well. He has made great progress in all academic areas and is doing great. However, he still has some articultion issues with his speech which means he will continue to recieve speech therapy.

This weekend was the spring meet at the train park. Tyler and Andy took the train up there and planned to stay the weekend there camping. Well Tyler got sick to his tummy Saturday morning but was doing ok enough to hang out and give rides to family and friends who came by during the day. His surgeon even stopped by with his little girl and Tyler gave them a ride around the park too. It was fun but very hot so we left early to come home. After some rest Tyler was back to his old self by Sunday.

This week Tyler will be starting spring swim lessons at our new neighborhood pool. Tyler has not been able to go swimming for 2 seasons now and has not had any classes since he was a toddler so it will be interesting. It has been getting very hot here this week so we went to the pool today. He did great so I hope the swim class will go over smoothly. I also have swim lessons planned for the month of June as well, so let's hope this spring week trial goes well.

Foot Doctor and more

2009-05-11T15:21:00.000-07:00

Above is a picture Tyler wrote (with some help) for me on my birthday and mother's day!

Sorry it has been a couple weeks since my last post but that is because all is going well. Well we do seem to have some hiccups here and there with his bowels but nothing major. A quick fix to his cecostomy flush and things seem to pan out, however, I am concerned we are having to fix or change his flush amount quite often and it will be a question I will have for Dr G at our next visit.

Today we went in for his long over due podiatry (Foot doctor) appointment. Tyler has been wearing orthodics for nearly 2 years now (not the same pair though) and I was hoping it would be time to try without them but I was wrong. While the doctor has seen huge improvements since our first visit 2 years ago he still wants him to continue to wear them. I was hoping he could wear cheap shoes but nope doesn't look like that is gonna happen anytime soon....so I guess we will continue to spend $50 a pair at stride rite.

Tyler continues to grow and make huge strides academically. The school year will soon be coming to an end and soon he will be moving on up to first grade. He is so cute because he comes home and tells me quite often "I am almost a first grader". And he is excited about all the new duties first graders have like eating lunch in the cafeteria and playing at 3 recesses. This Friday will be having his annual IEP. This is the plan for his speech therapy where we all meet together as a team to discuss his strengths and weaknesses and come up with goals for the next school year. So far for this school year and possibly next it looks like the only extra help he needs is to continue speech therapy. Right now he receives speech 1 time a week and I am hoping that will be the recommendation for next year.

Train Crazy

2009-04-24T20:11:00.000-07:00

Well for those of you who don't know or haven't figured it out yet I've got not 1 but 2 train crazy fans living in my house...can you guess who they are? Well one begins with a T and the other is his daddy. These boys of mine live and talk trains all the time. Well the most recent excitment in our house has been Western Heritage Tour with the 844. This has been a big deal to my boys this train doesn't make it's way to CA very often, infact the last time Andy saw it he was either in gradeschool or junior high. Anyways grandpa and Tyler watched the train arrive at the station and now we've gone back to see the train and take pictures by it. This same train was on an episode of Extreme Trains. Anyways just wanted to share all the train craziness here & Tyler is doing great health wise!

We survived Vacation!

2009-04-09T18:49:00.001-07:00

Yep the title says it all we went on vacation. We decided to go somewhere fun and where else but Disneyland in Southern California. I got an awesome package from Costco and we stayed in the luxery hotel on property...The Grand Californian Disney Hotel. I tell you this hotel was great. We had a room with bunkbeds for the kids and a great view of the fireworks show each night from our balcony. This was great since Tyler had to do his nightly flushes and didn't have the energy to go back into the park to watch the fireworks.

I tell you Disney is great with accomidations for people with disabilities and food allergies. I called Chef Chris ahead of time and he told me where to go once I arrived to recieve the celiac list to find gluten free food. And on the phone we went over what brands they offered and what food would be safe for us. I was pleasantly suprised with the choices of allergy friendly food and the quality of it. Each time I ordered the chef personally came out to talk with me and go over our allergies. We had pizza, pasta, hamburgers on buns, hot dogs on buns, chicken sandwhiches, fries, sorbet and salads. The first hamburger Tyler got he was certain we gave him someone else's food. He was pleasently suprised when he was allowed to eat the bun. I ate the food too since Tyler and I are on the same diet and it was all very tastey.

In both Disneyland & CA Adventure park they have this pass for people with disabilities called the GAC or SAP. Basically this pass is for people with various medical or physical disabilities who can not stand in the regular public line. It doesn't mean you get to the front of the line, it means you stand in a separate line for a shorter ammount of time than the general public. With this pass we hardly waited at all and got to ride every ride in both parks several times throughout our 4 day park pass. It is deffinately the way to go if you are traveling to the park with someone with a disability. Tyler most deffinately could not have tollerated standing for an hour in the regular line, he would have been exhausted & done for the day after 1 ride.

Just before our departure we had passes from our package to go to a character breakfast. We decided to go to the Chip and Dale's Storytellers Cafe at our hotel. The entire trip we never once got Tyler to get his picture with any character or show any excitement for them. He was like a different kid at the breakfast. He danced around and hugged all the characters that were there. I was a little dispointed in the taste of our pancakes but they were cute in the shape of Mickey Mouse but the eggs, fruit, bacon and excitement on Tyler's face made it all worth while.

Tyler & my favorite ride was the Toy Story ride in CA Adventure and ofcorse Tyler loved the train and monorail in Disneyland. Andy's fav was CA Screamin & Space Mountain, Isabella's was Tower of Terror & Space Mountain. We had an awesome vacation but we are happy to be home now! Oh and on the way home the airline lost Tyler's bag but a few hours later they called us saying they found it.

To see some pictures of our vacation follow this link:

http://www.picasaweb.google.com/AJBerchielli/Disneyland2009

Doctor week

2009-03-19T19:29:00.000-07:00

Well last week I mentioned that this week we had doc appts almost everyday. I made it through them. Monday was our appointment with Sergio the man who customizes Tyler's orthotics. Well it turns out yes Tyler is very close to needing a new pair but has enough room for another month. So next month he will check them again but we decided to head over to stride rite and get new shoes anyways since his were badly worn out. He was very excited to get light up shoes and I was happy they are all navy blue with no white!

Tuesday was appt with our GI doc (whom is not my favorite, whoops did I say that outload). Anyways she is pleased with the progress and how well Tyler looks. He is 40# and 43 inches tall, yeah! I asked her about the burning Tyler had and she said she did not know why but she has 1 other paiteint who also complains of that too. She also suggested that maybe we switch to using go-lytely in his flush instead of the current mix (which is working now). We got to see our favorite nurses and many of them raved about our tv show.

Thursday was appt with the surgeon (whom is our absolute favorite doctor ever)! Together we switched out Tyler's mic-key button, which was very easy. I told him what GI said and he didn't have a happy look on his face (which isn't the first time when telling him about GI doc). Anyways he said no no to the golytley and I have to say I agree with him and value his medical views more than the GI. He wrote us note so we can carry our medical supplies past security when we go on vacation in 2 weeks.

After that we went over to the hospital to say hi to Greta the therapy dog, whom had a birthday the day before. We also dropped off two books (one to surgeon and one to child life). This book is an awesome resource I recommend all to read to better understand Hirschsprung's Disease. You can order yours from here:
http://www.hirschsprungsdiseasehelp.org/

That is it for doctor week and we don't have to follow up for 3 months. It is so great to be on the 3 month list instead of the bi-weekly or monthly visits. Oh and this week the leprachan visited Tyler's class and totally messed it up and bi-passed all the kids traps. It was the huge excitement for him this week.

Rough Week but thankful for solutions

2009-03-11T22:09:00.001-07:00

Just wanted to give a quick update on our rough week which finally settling down. It started about a week and a half ago when I started to notice Tyler going in and changing his pants more often than his normal. Then as the days went onto the weekend he required assistance with changing his pants. For him this is a red flag of something not going the way it should. So I gave our surgeon a call who also seemed concerned but suggested to take observations and then come in begining of week for an xray. Well during this time I had suspecions that maybe his flush "recipe" was needing some adjustments so I had been adjust the soap in his solution. Monday during his flush he was screaming in pain that it was hot, very unusual so we thought maybe I made the solution to warm but I thought maybe it was the soap increase. So Tuesday I made the solution the same way and the same thing happened so we concluded it was infact the soap causing him extreme pain and discomfort so we are back to a lower ammount and so far so good no pain and minimal to no accidents.

On some good notes I think this nasty RSV cough is finally gone! Next week is a plethera of doctor appts....Monday new orthotics, Tuesday GI and thurs with our surgeon. Thankfully they are not all in one day but I don't know why this keeps happening with all of them scheduled for the same week. Tyler is continuing to enjoy school activities and more exciting new dances they are learning. Today he told me he needs tap shoes, I think it is great that all the kinders have the opportunity to take dance lessons together at this awesome school. Only less than a month to go till our family will be going on an exciting vacation!

Videos

2009-02-25T20:10:00.000-08:00

Sorry it has been over 2 weeks since I have updated. Despite a few bouts of a deep cough and cold Tyler is doing good. I decided to finally get those videos up. So the first one is the play 3 piggy Opera. He is singing in the chorous in the 2nd row to the far right with a stripe shirt on.

This second video was a week ago the kindergarteners take dance daily at his school and this was part of their showcase. All I have to say is he is not the shy little boy anymore. He is in the back row behind the girl in the front with the heart on her shirt. You will eventually notice him as he plugs his ears and then at the end shows off by jumping back on stage to wave.

For my email subscribers here are the links to the videos:
http://www.youtube.com/watch?v=zq-3E7ACBXw

http://www.youtube.com/watch?v=QOSnaEdlFIg

What's Happening

2009-02-03T09:58:00.000-08:00

Sorry I haven't posted in a couple weeks but I can assure you that all is well. We did have one teeny tiny minor incident with the mic-key button but it turned out not being nothing at all. Tyler is doing great and just enjoying life. We have a lot of exciting things planned for this spring/summer so keep an eye out for those messages.

We had our follow up with the surgeon last week and he is pleased that all is well. And we don't need to follow up with him until late March. In March will be Tyler gets his Mic-key button switched for a new one but that is easy and should not require any sedation for it.

Believe it or not I still have not uploaded the video of his 3 Piggy Opera but here is a picture of him after the show. I am so proud of him.....he just loves school,dance & music this school is deffinately the best match for him!

Moving Along

2009-01-21T20:10:00.000-08:00

Things are moving along. The preformance last week "Three Piggy Opera" was adorable. Basically it was the story of the 2 lil pigs but opera style, well not real opera but singing. It was so cute and those kinders and 1st graders blew me away with their singing and acting talents. Tyler was in the chorous and did great. He was too cute with his lil piggy hat. I've been lazy lately and haven't uploaded pictures from my camera yet.

This week he had a follow up with his ENT(ear doctor). The ears look good and now we finally get a break and don't need to follow up with him for 6 months. On another note Tyler's speech therapist had to take an early maternity leave and he has not had speech therapy since December. I am not at all happy with this and have already talked to the school district because Tyler has this in his IEP. I have been assured they are working on getting a new therapist to the school and that they will do make up sessions. It is really sad because Tyler isn't the only child suffering by not getting speech therapy.

Oh Tyler's snoring has gotten worse since his adneoid surgery, it hasn't helped that he also has had a cold for 6 weeks straight. Anyways the ENT mentioned something about sleep apnea and we might want to get him tested for that if the problem is still there after the cold is gone. Oh boy that will be fun I am sure.

Meanwhile on the bowel side....we have had a few hiccups in figuring out the solution that would help. There is no one size fits all with the cecostomy flushes so it took some trial and errors but I think (knock on wood) we finally have it figured out.

Back on track

2009-01-12T17:20:00.000-08:00

Just wanted to update everyone that the saline only flushes seem to be doing the trick for now. So I think it is safe to say he is back on track (knock on wood). We just need to keep Mr Sneaky pants away from chocolate because that adds to the problem. He is so sneaky he found some chocolate at Grandmas and in Daddy's stash and ate it....then later he told on himself, hey atleast he is honest. He goes for a follow up with the ENT on the 20th and the surgeon on the 28th. If things change I'll let you know but for now things are going good. This week he is in a school play called "The Three Piggy Oprah", I am excited to see what this is about.

The Bubbling tummy & a new plan

2009-01-07T18:08:00.000-08:00

Tyler wasn't doing that great today. He said he felt fine and he acted fine today. But all night his tummy was gurggling noises. So loud I could hear it in another room and that still went on today. Then he wouldn't eat breakfast which I thought was odd but figured he would be hungry at noon when he comes home. Well he came back home with almost all his snack, rare again. And he only ate a few bites at lunch. All very odd but he had no temp and acts ok. Then he said he pooped. So he sat on potty got some poop out and had a small smear in his underware. So I left a message for the doc to call me.

Of corse this evening he ate a sandwhich and a piece of pizza. The doctor says maybe the glycerin is making the colon overact. So he wants me to take it out and up the salt for a few days and then check in with him this weekend. I told him all this started when the button got placed, well the eatting stuff was just today but the accidents have pretty much been daily. Oh and I told him Tyler can't hold the poop in when the flush is going but during the day he often comments how he is holding his poop in all day. Anyways the plan is to have him try to sit during flush and hold it in. I sure hope this all gets sorted out because I don't want to put him back in pull ups full time again.

One Year Ago.....reflections on 2008

2009-01-03T16:40:00.000-08:00

One year ago this month my poor lil guy was fighting for his life. One year ago we went to the ER and waited to be seen, after 4 hours we actually almost left to go home something told me to stay. Thank goodness we stayed otherwise we would not have met the doctor who literally was the answer to our prayers! One year ago our son was diagnosed with Hirschsprung's Disease. It was a clear concrete answer to all his constipation problems and now he began his journey to getting better. Little did we know that it would take 3 surgeries, 1 surprise surgery & 2 unexpected outpatient surgeries until he had a "more normal" colon. In 2008 he stayed in the hospital for over 35 days for 4 different admissions. He spent most of those 35 days NPO (meaning no food or drink by mouth), he lost weight but when he came home he would quickly put it back on.

We've learned so much as a family and have been able to connect with other families with kids just like him. We've received all the love & support from family, friends and even strangers across the globe. We have been able to share our story with others through this blog, online, in person and most recently on the Discovery Health Channel. Tyler was granted the most special thing of all....his very own train from the Make a Wish Foundation. Having this train has brought strength, hope & happiness to Tyler and our entire family.

While this year has been an emotional roller coaster I am so thankful for every moment & for all the prayers answered!

Tyler is in kindergarten and enjoying school. He love dance & music at school. He has grown so much this year and more than just in height, emotionally he is wise beyond his age. Below is a slide show of pictures taken through his journey of Hirschsprung's Disease in 2008.

Last surgery of 2008

2008-12-30T13:23:00.000-08:00

Well today was his last surgery of the year and hopefully the last one for quite a while. Tyler had his ear tubes replaced & his adenoids removed. He is doing fine and resting comfortably now at home.

We had to go to a different medical facility outpatient center then we normally go to because his ENT (ear doc) is contracted with this one by his office. Well I have to say our normal hospital has spoiled us rotten because this one doesn't have all the relaxing features of normal one has. They don't have child life and when I inquired they had no idea what child life was. One thing that really bugged me, well two things, the anesthesiologist was very pushy on Tyler getting Versed to relax him and was just not making funny jokes. Anyways I told him he would do ok without the pre-med but the guy was so insistent on it that I had them give it anyways and then because Tyler has issues taking meds orally he ended throwing it all up. Then while waking up from recovery Parents are not allowed to come back until the child is fully awake. This is so different from our other hospital when they bring you back right away so you are the first face your loved one sees. I was waiting in the waiting area for over an hour and a half when the surgery was only 15 minutes it was insane. Definitely a complaint I will have when the costumer service letter comes to me. Fortunately for Tyler he did not wake up angry or upset and was calm by the time they allowed me back to him.

So here is to hoping the 2009 year is relatively surgery & complication free for Tyler!

Things moving along now

2008-12-26T08:26:00.000-08:00

I just wanted to report how things are going since Tuesday. Well he ended up being pretty sick from anesthesia. He had a hard time the rest of that day keeping anything down. He never really even got advanced to liquids. But he was able to sleep it off through the night and wake up xmas eve day feeling much better. So he is back to his old self now. So far we've done 2 flushes with the button and they are running smoothly.

Christmas went well and he was so thankful with every gift. As he opened his gifts he would say with such excitement, "Oh this is what I always wanted!" We've got so many cars,trucks and stuff we now need to reorganise the playroom. Daddy is planning to build cubbie holes to help store them all. We also might be saying good bye to Thomas the Train wooden set; it is just too much stuff and takes up too much room.

Now to answer questions that I get often....

Q: Why did he have to get the button?

A: Well it turned out that his colon just can not fully empty the stool out which can turn into a very serious situation for him. If the stool sits in his colon (even a small amount) his colon starts to become impacted and the bacteria starts to grow which seriously threatens his life.

Q: what does it do?

A: Well basically the cecostomy is another way to give an enema. The button is a port that we put a saline & soap solution in to flush out his colon.

Q: Are there anymore surgeries?

A: Well the button will need to be replaced every 3-6 months but that is easy enough to do just in the doctor office or at home with out surgery. As long as this continues to work for him there are not anymore surgeries planned.

Q: How long will he need this button? Is it permanent?

A: This is a hard one to answer because it is kinda a wait and see approach. The cecostomy can be reversed at anytime but if the overall goal is to help his colon stay clean why would I ever want to risk that with reversing it? The doctors plan is to use the flushes daily for the next year or two and then slowly skip a day here and there. If skipping flushes prove to be successful then we can try to not use the button to see if his body can do it on it's own.

From what I hear from some other people is that once they enter puberty something just clicks and the colon starts to work, not in every case but it could be an option for Tyler too.

I hope everyone finds my little Q & A helpful and clears up any confusion anyone had.

Mic-Key button is in..

2008-12-23T14:40:00.000-08:00

Tyler and Russell (his doll) now have their Mic-Key buttons in for their cecostomy. We skipped the pre-med aka silly juice this time and had anesthesia go straight for the gas. Monique from child life went in with him and helped him remain calm in the OR. He woke up really good this time. No violent outbursts and no seizures. He was calm and quiet. Because he didn't get the silly juice things went real fast by the time we checked in he barely had enough time to change clothes before it was his turn. This all ment things were done and over with fast and we were on our way home before it was even his actual appt time! Child life spoiled him with a plethera of gifts (transformers & some really cool Incrediable Hulk hands). They also gave a gift for us to bring hom to Isabella (big sister) too!

He is doing well now and doesn't even seem like he was just under. However, he played around too much and now is tired and threw up. So no advance to solids just yet. Well hoping this is it for a while. Well besides next week with the ear tubes and adenoidectomy.

One Week to go.....

2008-12-17T13:11:00.000-08:00

In one week (on 12/23) Tyler's temporary cecostomy tube will come out and a button called a Mic-Key will be put in. Tyler has had lots of reactions to the variety of tapes we have used, leaving his skin itching, very red and chaffed. The doctor gave us the idea of using a band instead of tape. Well about 2 weeks after he got his tube we convinced Tyler to give it a try. Oh life has been so much eaiser since we switched to the stretchy band. It gives his skin a chance to heal. We ran out of the good stuff so I went to buy more unfortunately it isn't as nice as the hospital kind but it still works. Above is the picture of his cecostomy with the band around it.

Well I have to say so many friends have been so kind during our medical insurence saga. I've had a few very kind & good friends give me the medical supplies we needed. A few weeks ago I had been looking on this website called The Morgan Project . They had a section of donated medical supplies that were available for free. So I filled out an application for the gravity feeding bags and to my suprise several weeks later a package arrived to me. It was about 20 gravity feeding bags. I am so thankful to recieve them and now I have a good supply to last we the next 2 months while we transfer to a new insurence and figure out the medical supply issue again. These gravity feeding bags are used for Tyler's flushing of his colon.

Song of Love for Tyler

2008-12-13T15:04:00.000-08:00

Today Tyler recieved in the mail his Song of Love . I heard about this through another family with an ill child and decided to get one for Tyler as well. So I created a video slide show to go along with the song. See it off to the right or follow this link

Tyler enjoyed the song more after I created the slideshow.

Crazy busy Doctor week

2008-12-11T18:44:00.001-08:00

I swear this week we have had an appointment with just about all our specialists. Anyways Wednesday was the neurologist appt:
I did ask him if all of Tyler issues and quarks could be connected and he left us to go do some research for like 20 minutes and he came back with 2 things dwarfism and the waargenburg thing...neither fit Tyler. We will be doing an MRI on Tylers spine next month we want to rule out tethered spinal cord. He has a few symptoms of that and it has been something I wanted tested but I had filed that one away since he got the HD diagnosis. We talked alot about Tyler's seizures coming out of anesthesia and we just need to keep an eye on it. It could be one or it couldn't he said it is hard to say. Tyler really freaked me out on his last hospital stay when they did the pre-op bowel disimpaction stuff, I didn't use versad and he came out really bad(and I was alone his nurse had left too). And I swear he was having seizures...I even took a picture of his face which looked terrified and paralyzed. But he didn't show anything else noticeable after all that wore off or the next day when he had more anesthesia. In the past for outpatient he has also hallucinated too which we thought was versad but who knows. Anyways with two outpatient things this month we shall see what happens. Oh and that EEG from June came back normal, which means no seizures at the time of the test. So he has had one abnormal test and two normal now.

Today was the surgeon follow up Dr Gates. Things look good and is healing up nicely. We are scheduled for 12/23 to get the tube out and the button in. After a long discussion it seems like for now we will be giving the mic-key button a try.

Urology & ENT updates

2008-12-08T16:33:00.000-08:00

Ok the floppy bladder the urologist is not worried about because all other tests indicate things are fine. He said it is possible Tyler may have a neurogeneic bladder but he doesn't treat unless it is causing a problem. They did a post void u/s in office and his bladder was completely empty. His bladder might be a bit overactive but he said if it isn't a problem we can let it be. He did give us a month sample of Detrol LA and said we can use it if we really want to but at this point it isn't really a necessity. Tyler is having urine accidents during the day and only ocassionaly wets at night. He pees 3-4x an hour and wakes up once a night to pee.

If anyone can tell me long term affects of Detrol LA and if it can cause constipation that would be great?

Ok onto ENT.....all tests show that the tiny hairs and nerves in the ears are working just fine. He really feels it is related to the eustation tubes not draining appropriately. He feels that the adenoids are blocking the eustation tubes which is not allowing them to drain. So as of now surgery for the adenoidectomy and PE tubes are still on for 12/30.

New Name same blog

2008-12-07T13:35:00.000-08:00

I just felt it was time to change the name of this blog. I felt the old name myspecialone reffered that he was more special than his sibling which is not true they are both special to me. This blog really is all about Tyler's Journey in life and the challenges we have faced to get a diagnosis. I wanted to let everyone know it's still the same blog just with a new name. I hope this hasn't messed up any subsriptions but if it has please rejoin by visiting my blog directally @
Tyler's Journey

1 week with cecostomy update

2008-12-03T14:08:00.000-08:00

Well Tyler's been home for a week now and we've been using the cecostomy flushes for a week as well. At first his body was adjusting and he was still having incontinence during the day but as soon as we added the glycerine back in on Monday things have been great. The glycerine must be just was his body needs to give it that extra push to clean out during the flush. He has gone back to school and is doing great. He is still having some issues with showering without the tube taped up so we decided to leave him all taped up for his shower. His sensory issues make changing the tape and 2 x 2's difficult. Oh his button to be placed is now scheduled for 12/23.

Today we had our follow up with GI and she said she's already gotten a phone call from someone who saw our tv show and wants their child tested for HD too. I think this is awesome!!! Anyways she says all looks good with the cecostomy site. She would like to get us in with a physical therapist who comes to clinic once a month. I guess it's because Tyler needs to strengthing in his bowel muscles. I find this very interesting and curious how this would help but hey if she is willing then we will give it a try. He also lost a little bit of weight but that is to be expected from our hospital stays. He has been eatting very good so I'm sure he will gain that back in no time.

Day 2 home and flushes

2008-11-27T21:47:00.000-08:00

Well Tyler has been home now for two whole days and loves it. He is close to back to his old self...playing with his toys and eatting everything insight. He still walking like a little old man and we ask him if it hurts but the kid always says no and refuses to take pain meds. Some points when we see him struggle we do insist on him taking atleast tylenol. Today was an awesome day and we are so thankful to be able to share it with our family!

So far the flushes via the cecostomy are working pretty good. He kinda got really sad last night during the flush. It was the actual first time he looked down at his tummy and saw the tube and stitches and it was all a bit overwhelming for him. Bathing/showering is a challenge again just like it was when he first got his colostomy and I imagine with time he will get better and not be so scared. (However, we never got to that point in the 6 months he had the colostomy showering was always a huge task for us and for him.) Well I can hope it will be easier as time moves on. He is already showing the little neighbor boy how to do a flush on his doll Russell, this kid loves medical play. Poor Matthew(the neighbor boy) gets stuck playing hospital everytime he comes over atleast 1 time during his playtime visit. Tyler even felt comfortable enough to show his friend the real thing. Unfortunately not every child likes to see medical stuff and it kinda freaked the boy out but he is ok. I am so glad he is a nice and caring boy to play(he is about 2.5 years older than Tyler) with Tyler and that Tyler feels comfortable enough to share these personal medical details with him.

After a detailed chat with the surgeon Tyler will have to take it easy the next two weeks which means no dance, no horseback riding and no rough housing. Hopefully if things go well he can resume these fun activities Dec 8th. He is out of school this week for break but he will go back Dec 1st. He goes to a preforming arts school so not being able to dance and move around might be challenging but hopefully we can make it work for 5 days (I deffinately don't want him to miss any school).

We have a follow up with my not so favorite pediatric GI on 12/3 and then our favorite surgeon 12/11. Hopefully soon we will be able to set the date for the button.

Tyler is home!

2008-11-25T14:49:00.000-08:00

I came home last night to watch our Mystery Dx episode and it was awesome. Anyways this morning my husband called as I was getting ready and said no need to come up because Tyler will be coming home within the next hour or two. Oh he is so happy to be home and he enjoyed seeing himself on the tv show as well. My husband did the flush this morning with 400 ml saline and things worked well. So I guess in about 6 weeks or so Tyler will go back as outpatient to get either the Mic-key or the Chait button. Until then he has this temperary tube in that we have to coil up with gause and tape. I just hope his skin doesn't react too badly to the tape like it did when he had the colostomy. The nurse gave us an idea to make a belly band using this stretchy gause stuff so we shall see if that will work, otherwise I may decide to see if I can make a belly band for him with material or stretchy elastic.

Another Hospital Update

2008-11-24T14:11:00.001-08:00

Ok here is our Sunday and Monday update....

He is doing pretty good. He has been up and walking the last day or so. He got advanced to food but he hasn't been able to eat more than a few bites without feeling sick. The foley urine cath came out today and he is walking around better. We've done 1 small flush via the cecostomy tube and that went well; we will do another flush tonight. We are still hoping to be able to go home tommorrow but we shall see since he hasn't been able to tollerate food or drinks.

Don't forget to watch us on Discovery Health tonight! (mystery diagnosis show)

Saturday 11/21 hospital update

2008-11-22T19:13:00.000-08:00

Picture above is the happier moment before addmission when Greta visited with us. Well it's my night to come home and get some rest (yeah after 3 days of being at the hospital). Anyways Tyler has had issues today, nothing major but just not cooperating and so done with surgeries. He is also still having lots of pain but I think we may finally have that under control with a new pain med on board. His mood and attitude are not so good he has been yelling at everyone. Hopefully that will change after he gets more sleep. We managed to go all night and then most of today without a roommate but this late afternoon we got a roommate. Sounds like he won't be there long, it is hard not to listen when there is only a thin curtain between the two beds.

Because of Tyler's pain he hasn't wanted to move or anyone touch his bed...while giving him a sponge bath we noticed his right foot was very swollen and his lungs are all gurgly. This is a sign of poor circulation from laying too long and we are trying to get him up out of bed. The closest we got to that was propping him up with his feet hanging off the bed. Tomorrow's goal will be to walk. He was advanced to clears tonight but he refused to drink anything. Did I mention he is a stubborn 5 year old yet. Hoping tomorrow goes well.

I was wanting to post a picture of his cecostomy but he has not allowed me to take a picture of it yet. He hasn't even looked down at it either. But Russell his doll was ok with me taking pictures of his. So if you are interested here is what a cecostomy looks like on a doll.

Surgery Update-Cecostomy

2008-11-21T11:46:00.000-08:00

Well he is out of surgery, it ended up being over 2 hours. We've had a few complications but doing ok for now. His bladder was floppy and distended and the surgeon accidentally punctured it while moving it out of the way. It is repaired and hopefully will not have any further issues. Then he was given an antibiotic in the same "cillin" family and is having a reaction to it. Red swollen face and blotchy skin and a fever. He is allergic to amoxicillin so they were certain he would not react to this but he did. His cecostomy site looks pretty good and in 4-6 weeks he will come back as outpatient for the button. Until then he will be staying here till Tuesday. Oh and his doll Russell had his cecostomy surgery today as well and is recovering well too. The child life was so kind to complete the doll surgery for us.

Dr G already got a copy of our show and watched it. He said it was very well laid out. And he said he learned things about us he didn't know like that we have a daughter....I swear I told him about her, oh well. I'm jealous that he got to watch it before us.

admitted now

2008-11-20T15:03:00.000-08:00

Besides the traffic this morning things are going pretty smoothly. We opted to skip versad this time and he did well separating from me to the child life. But when he awoke he was not so good...very violent this time kicking and screaming. We might opt back in for that Versad next time. The only reason why we didn't want it this time is because last time he hallucinated for 2 days. He did fine for dis-impaction and the doc said he was actually surprised at how little was in his bowel considering we skipped last nights enema. We still have to do the standard bowel prep which is go-lytely via NG tube (meaning tube in his nose). So far he is not tolerating that well and has been throwing all the meds up. Surgery is scheduled for 7am tomorrow. Unfortunately the hospital is full and so far we are sharing a room with a 2 year old boy. I just hope we can all sleep tonight. Yeah the hospital has computers for the parents to use! Atleast I won't loose all my outside connections.

Hospital admission awaits us

2008-11-19T12:36:00.001-08:00

The time has come Thursday morning(11/20) we are going to the hospital for pre-op stuff and admission. Tyler will have a dis-impaction...which is a clean out of his bowels in the OR(operating room). Then he spends the day recovering from anesthesia (in the hospital)and getting ready for surgery on friday bright and early 7am. I hear the hospital has computers now for families to use so hopefully I will be able to update everyone and check emails when I am bored. Hoping this will not be too long of a stay but at this point we are anticipating staying up until thanksgiving day. Hopefully he will go home sooner but it just all depends on his recovery and his bowels "waking up". In the past they have been slow to "wake up". So please keep him in your thoughts and prayers for a speedy recovery.

Surgery Date Confirmed

2008-11-11T16:52:00.000-08:00

The date has been confirmed on November 21st Tyler will be getting his Cecostomy . Well he will be getting a temporary tube 1st and then 6 weeks later we go back and get the Mic-Key button . So he goes in on the 20th for a disimpaction of his colon and will be admitted. Post op he will likely be there from 4-7 days. It just all depends on how quickly he recovers and his bowels wake up. So if we are lucky we will be out just intime for thanksgiving, well that is my goal anyways. All his hospital stays have been on or very close to a major holiday or birthday. Let's see his 1st stay in January he was there during Martin Luther King holiday. His 2nd stay he was there for my 30th b-day & mother's day. His 3rd stay he was there for his 5th b-day and he went home just a day before the 4th of July.

It looks like we may even miss watching our episode on Discovery Health channel . Well we have it set to record on tivo and I guess we will watch it when we get home.

Please continue to pray for him. I have full faith that God will be with us & has been with us this whole journey.

Our Story on TV...Discovery Health Channel

2008-11-05T09:32:00.000-08:00

For those of you who don't know this past April we worked with the discovery health channel to get the word out about our son's mystery condition (ok after the mystery was solved). I've kept this hush hush until now. I looked on their website and finally we are listed for November 24th on the Discovery Health Channel, the show is called Mystery Diagnosis. Check with your local satelite/cable company to check the channel & time. I believe it comes on at 10pm.

The title of the episode is The Woman with the Giant Lump....

here is a blurb from their website:
Mystery Diagnosis
The Woman with the Giant Lump

Soon after solid food is introduced into Tyler Berchielli's diet, he begins to have infrequent bowel movements, sometimes just once a month. Daisy Hill, an active 41 year old bodybuilder, notices a painful lump in her jaw while training for a competition.

So please keep your eye out to watch our story. And grab the box of tissues. Hey I haven't even seen the episode so it's just as exciting to me as it is to you!!!

Costume

2008-11-01T12:58:00.000-07:00

Ok so Tyler likes to dress up all the time around the house....a doctor, construction worker, knight, etc. But when it came time to wear a costume for halloween parties he refused. He did pick his own costume out first Iron man but that costume had a defect so we took it back and then he traded it for Red Power Ranger. Well his class had a party and he refused to wear anything costume like...the closest thing he got was wearing a shirt that had a firetruck on it. He has a cute raincoat that looks like a fireman coat but he would not wear it. I put the fireman hat in his bag just incase. He ended up being the only kid in the class not in a costume and I think he felt the pressure so later when I came to help out he had his hat on. Anyways last night before the school carnival daddy finally convinced him to be a power ranger. Atleast for a few minutes, he tried to take his costume off in the car on the way there. But too bad he had to wear it, can't walk around in your underwear at school right? He had fun at the carnival.

Oh....I got a huge donation of those feeding bags I need for enemas, anyways they reak like cigar smoke. I hate to toss them out because we can really use them but does anyone know if I can get the smell out? They are all indiviually sealed but the smell has leached all the way through. I hope I will be able to use them.

Cecostomy & illness

2008-10-29T18:50:00.000-07:00

Well this weekend was a fun one. Tyler brought home a tummy bug from school. He was fine most of the day saturday and then we got to a halloween party and he announced "I'm gonna throw up". He dry heaved all the way home but then for the next 12 hours it was vomit explosion at our house....so fun. He is better now and no one else in our house has come down with it thankfully.

We saw Dr G today, his surgeon. At his office he introduced us to a family with a newborn who also has HD...he said he rarely gets to do that... so I hope the family will contact me so we can chat more. Anyways I told the doc about what has been going on with the flu, the leaking and then not leaking. And I told him we discussed it and we think it is time with the cecostomy. He agreed and started to explain the pro and con for both the cecostomy and the malone. He showed us a doll with a Mic-Key button, which will be the same button Tyler will get after the temporary tube is removed it will just be in the colon not the stomache. Sounds like he will be in the hospital for 4-5 days and then come back for outpatient to switch tubing. This will be a good change for us all!!!

I talked to him about why does his colon not work properly & how long will be have to do this(enemas, irrigations or flushes)? And his reply was he thinks it may take years for his colon to get proper function based on all the years it wasn't functioning but in all honesty he doesn't really have answers and only time will tell. He did say the younger we do the cecostomy the better. So I'm waiting to hear back from his scheduler but it looks like it possible to do it the week before thanksgiving. If this is the case I will have to move his ear tube and adnoid surgery to another date.

Oh and about Tyler's flu....he said it may have been a slight case of entrocolitious and that Tyler is more subseptable to catching every bug because of his colon. I did think it was odd that no one in his class has caught this bug nor has anyone in our house (knock on wood).

Please continue to keep Tyler in your thoughts and prayers.

Kidneys,Ears & Adnoids

2008-10-17T12:02:00.001-07:00

So the doctor's office wanted us to go get a renal ultrasound. Renal is a fancy medical term for kidney. So there about is his left and right kidney. We also got pictures of the bladder and other stuff that connects it. Anyways we don't have the results still we go to our follow up with our surgeon in 2 weeks. I tell you it was hard first off they wanted him to fast (so gas would not block the way) & then he had to drink water and hold his pee. I thought the holding the pee was gonna be the hardest for him but actually it was the fasting that was harder for him. His test wasn't until 10 am so yes I guess he was a bit hungry. Here is a picture of his bladder after he went pee...it was huge before he went pee...

So on the bowel side I think we are finally back to where we were before we skipped that one day of enema. Yeah I don't think we will be skipping anymore anytime soon. I've had to alter the recipe a little bit so for right now he is 450 ml saline w/ 25 ml glycerine. Still battling it out trying to get the medical supplies covered but I've been lucky some awesome PTN friends have donated some for us to make it for the next month. I've contacted a local disability advocate group and they are helping me to get this figured out. We did a conference call with the insurence company but ironically a supervisor was not available so we will try again next week.

Also this week Tyler had his routine hearing & ear check which we do every 3 months. Well it looks like the tubes are completely out and fluid is building up again in both ears which is severely affecting his hearing. They said he tested for a hearing loss in his right ear. So the ENT said let's get another set of tubes in and since he is a new ENT or us he says he has a longer lasting material to use. His previous 2 PE tube surgeries were done by another ENT and those sets both only lasted 6 months each. This new ENT also suggested he removed the adnoids. He said they could be what is causing the consistant problem with the fluid behind the ear drums. Well it looks like that is what we will be doing soon. Atleast ear tube surgery is outpatient and is nothing compared to all the other surgeries we've done.

Some of my How to Medical Videos

2008-10-11T19:38:00.000-07:00

Just a few videos I have on youtube....

The How to of enema, how to of colonic irrigations....ofcorse no real children were used in the videos & nor does it show real poop or anything.

Pumpkin Farm

2008-10-07T08:55:00.000-07:00

Well we had our first offical field trip for K-3 at his school yesterday. It was about an hour drive away but I guess it was worth it for the educational value. In the begining they had the kids stand in lines by class and wanted the parents to stand in another area. This was difficult for Tyler since he is having a ton of school separation issues with me. But another parent went over and chatted with him and he seemed to be fine after that. Technically it was only for like 5 minutes and I was only about 20 feet away in his visual area. After that we were reunited and went with our class to do the activities. There was the class picture, pumpkin, hay ride, milking a fake cow, learning about hay baling, petting the goats, learning about alpacas, learning about more animals and petting them and then finally lunch and playtime!

On the bowel front we've still haven't got things back on track from that one day of skipping the enema but we are almost there, just a bit of patience and tweaking our recipe and I know we will be there.

Ok call us over-loving parents who don't really parent by any book and we've got our own bad habits which need to be broken. Finally this past weekend we started to transition Tyler to fall alseep at night in his own bed rather than with Daddy on the couch. It's still a work in progress but my overall goal is that eventually after bath he will hop into bed, read a story and then go to sleep. I'd say we are almost half way there...which isn't too bad for not even doing this for a week yet. It is a huge ajustment for him but one that is needed since he is older and has to get enough sleep each night for school.

Trains, trains everywhere.....

2008-09-28T17:34:00.000-07:00

Yep that's what I said trains were everywhere. This weekend was the fall meet for the live steamers railway. And Tyler had his train out there to show off. We are only a 30 min drive but Tyler and Daddy decided to camp out there all weekend. It was the first camping experience for Tyler and I think he had a blast! He loved to give people a ride on his train and ofcorse take a ride on other people's trains too.

Dr allowed him to miss his enema treatment for one night and note to self not a good idea. The next day he hardly ate, was fussy and had a bloated belly. He was a bit angry when we took him home the second night just to do his treatment but it needed to be done. I am still seeing the aftermath of skipping that enema....some leakage and not eatting well.

But I guess if he got to experience this train thing, camp out and have fun it was worth it. Soon we will get his bowels back on track after todays treatment!

The follow up w/ GI

2008-09-24T17:40:00.000-07:00

I've put off this appt for so long...well actually it had to be put off because each time we ended up being in the hospital and couldn't make our appt. This is with our pediatric GI that we have been seeing for 2+ years now.

Quite the interesting appt. I never felt so relaxed and so did Tyler. I didn't sugar coat anything but I was poliete with her too. She gave me a crap load of bags (you know those feeding bags I fighting to get) which will last me a while. So I told her how things were going with a disimpaction just a month or so after ostomy closure...she was shocked (did she not see the surgeon cc'd her or what?). Anyways I told her I've done a ton of research spoke with Levitt and our surgeon and we are doing bowel management of the enemas. She was shocked and did not like this idea. I told her we have been discussing the idea of the cecostomy or malone with the surgeon and it is likely in the future but for now the enemas are what we are doing to postpone that.

Too see her face, priceless.....she was so in shock. She doesn't think we should do enemas and actually she said why don't you guys just try Miralax. I said uh well no, we are going that route again. She said but that route was before we new he had HD. She said why not exlax and I told her exlax had not worked and actually the milk in it caused him more constipation due to the allergy. She urged me again to at least think about Miralax and I said ok I will think about it....then we joked about how I will think about it to the car...hahaha...She kept looking at Tyler saying you are too cute and oh I love your mama.....

She was also not infavor of a cecostomy for Tyler and said let's talk before we go that drastic. She still urged we take miralax. She also said if we go cecostomy will we take miralax...well I said sure but ONLY if it is really needed otherwise no. Then I said so we can do yearly follow ups now right since there isn't anything she can do for us. She said um no, I want to see you every 2-3 months, especially now that he's doing enemas.

New specialist...urologist & insurence fustration

2008-09-22T19:35:00.000-07:00

Well we saw a new doctor today the urologist. Tyler had been having issues with leakage and frequent urination since May. But ironically since he has been on bowel management all the symtoms have gone away. He was a really nice guy but hopefully we will never have the need to see him again.

Can I just share my fustrations in getting medical supplies. Yes we still don't have any (besides the donated ones). It has been a PITA getting this figured out. I'm running out of my samples and have no back up. The problems I am having is find a company that has both the feeding bags and the silicone caths...and will take both our insurences. It seems like they will only take one insurence but not the other which will leave me at a co-pay of 50% of the cost of the supplies. I literally spent 4 hours on the phone trying to get this figured out. I am hoping tomorrow I might find a solution. Really it should not be this difficult.

Follow Up with surgeon

2008-09-18T11:23:00.000-07:00

We had a follow up with our surgeon. And he is happy that the bowel management via enema is working well. He said we can continue them on as long as they are tollerated by Tyler. He said he spoke with L about the cecostomy (since Dr.L dislikes c-tubes) and both have agreed to continue on the enema regimine and then slowly wean back and see if that changes things. Dr L ofcorse told our surgeon he hopes that will help and then cecostomy will not be needed.

On a side note our surgeon was very concerned when he found out I had gotten a 30 cc balloon cath....so far I had only used it once to the 30cc. He said using a 30cc is not good for Hirschsprung kids because it will stretch their colon too far and cause more problems. So I guess it is different for those kids with IA. But he has told us to not go any higher than 10 cc for our son. He also was concerned about the amount of salt I was adding and has requested I cut back to 1 tsp per 1000ml tap water. I have been using cincy's standard formula 1.5 tsp salt per 1000 ml tap water. I mix it up in a bottle and then use what I need for the next few days before I remake it again.

So things are going well for Tyler. The hardest part for him is the inital inserting of the cath other than that he tollerates it all beautifully. We have been accident free for the past week or two. Tyler's recipe: 400 ml home made saline(luke warm) & 20 ml glycerine.

On another note I am having quite the run around trying to get the medical supplies needed. So far I've gone through 2 medical supply places that either don't have them or don't want to deal with our insurence. I don't know how people afford to get this stuff out of pocket? I was told for 4 cath and 4 bags it will cost me $50 a month. I did a google search and found the Oley foundation by accident and I am glad I did. Because I have been able to contact two people who have extra kangaroo feeding bags that they are willing to give me for free. I also want to thank another IA family who mailed me some supplies to get me started as well, thanks Gavin's mom! Also thanks to Benji's mom for mailing me some stuff too.

Tyler's Wish

2008-09-15T10:12:00.000-07:00

What a great day it was on Sunday September 14th. This was the hardest secret for all of us to keep from Tyler. Everyone knew what was gonna happen except Tyler. As we drove to his beloved park he was clueless where we were going. He entertained himself on the way by playing with a little stuffed monkey he won from school. We thought for sure he was gonna figure it out as we got closer, but to our suprise he didn't. When we arrived to the entrance of the park he said, "Hey, you tricked me. I thought we were going to grandma and papa's house for a BBQ?"

When we pulled up to the train area of the park we were greeted by family and friends, still Tyler had no idea what was in store next. When the Make A Wish volunteers presented him with a certificate and when the lady from Rolls Model gave him an engineer outfit he was not sure what was going on. Then everyone said turn around and along the track came his green train. He was still not sure what was going on until daddy said that is your train. They honked the horn and his eyes lit up with excitement!

For the next two hours he drove around pretty much non stop. We attached another car to it and he was able to pull several of his friends too. The SVLS also had another train out to take all our guests around too. News 13 followed Tyler around for most of the time and even took a very special ride with Tyler, one which we will never forget(see the video)!!! Also news 10 was there too and both stations aired his story on the 10pm and 11pm news.

Thanks so much to all that made this dream a reality possible for Tyler. This has been an amazing adventure to add to his journey! If you want to see more pictures of the day visit our picture page here.

Special thanks to: Make a Wish & wish volunteers, Rolls Model Trains, United healthcare, SVLS (railroad park),the Chessey Family, the Mitchell family and the news media: Channel 10 & 13!

New Look

2008-09-06T12:37:00.001-07:00

Before and during shots....

It has been a long while since Tyler has gotten his normal haircut because he had lost a patch of hair back in May....well the bald spot grew back and now was the time for a new hairstyle!!! My neighbor is awesome and cut his hair for me!

After shot.......

Oh on the bowel news things are continuing to go great with the daily enema regimine!

Tuesday's xray

2008-09-02T21:05:00.000-07:00

Well I got a call tonight from Dr G and all looked good with today's xray. There was still poop in there but it was on the left side which means it was on it's way out. Enemas are working pretty good and tonight I am... broke the news to Dr G about not wanting the surgery now and wanting to give enemas a long trial. He is happy for us to try that as long as we can all tollerate it. He is gonna have his nurse set us up with supplies...basically an IV bag and a cath & mix up our own solution instead of using the fleet daily. Oh and I mentioned to Dr G about my emails to Dr L and low and behold Dr L had emailed Dr G about us! Whoops hope I didn't get Dr G into trouble, sorry Dr G! The reason why I say that is because back east Dr G was taught to do a Malone and out here in the west they are not as trained staff wise to deal with Malone but they are for cecostomy so he kinda had to convert. Well they are buddies and will smooth things over, no worries! So for now it seems as tho surgery will be on hold until a later date. If all goes well I might consider doing it in the spring or summer break, that way we don't have to miss school. We love you Dr G!!!! Really he is an amazing doctor!!!!

Hummm......well maybe we will wait

2008-08-31T22:00:00.000-07:00

I know my last post I mentioned about the cecostomy surgery. Well we (Andy and I) have talked about it and are not sure we want to jump into another surgery just yet. In all actuality we have not given the bowel management program a fair try. Since the laxative seen to have little effect we have decided to go the enema route. My last talk with Dr. G he told us ok give enemas no more than 1 fleet a day. So that is what we have been doing this entire weekend. And guess what.....it is working!!! He is not soiling inbetween enemas (which is the overall goal of the program). While the thought and process of the enema is very hard on us all we have decided we are committed to this! I have talked with several other families who did the bowel management program with Dr Levitt/ Dr Pena @ Cincinnati Children's Hospital and they were told if enema is successful for along period of time then they can discuss a cecostomy as the child is older.

So Tuesday we go in for another xray and that will tell us if the enemas are truely working at cleaning the colon. Then we will have this discussion with Dr G about wanting to continue giving the enemas a long trial. I am sure he will be very supportive and help us so that we can be successful. It is a big commitment and I know we can do it!

Future....Another Surgery & Wish update

2008-08-28T20:25:00.000-07:00

Let me do the happy news first....things are coming together for Tyler's Make a Wish. His train is complete and we are waiting on details of delivery. We are shooting for Sept 14th(pending final confirmation) being the delivery, unveiling and party! It is kinda suprise at this point, although he knows he is getting the train just doesn't know when.

Now the other news, well this news isn't a bad thing, nor is it unexpected to me but it is much sooner than we would have thought. Tyler has continuely been having constipation and fecal blockages ever since his ostomy was close 2 months ago. We've been doing enemas, rectal irrigations and laxatives along with Xrays every few days for this whole time with little to no success! Today after yet another xray, which the lab techs know us very well now, our doctor called. He said he spoke with his colleagues and former colleages back east and they have all argeed the next step for Tyler is a cecostomy. Basically it is a cathator that is surgerically placed into the large intestine so that an enema can be used to flush the colon. He will still poop out his bottom but this is just extra help to move the stool out. It is something we will have to do once a day and that is when he will have his bowel movement. This will help him tremdously with his bowel accidents.

The doc actually wants to have this done ASAP but I have convinced him to please wait until after Tyler has had his Wish. So we are looking at the end of September for this surgery. Please keep him in your thoughts and prayers.

Tuesday's update

2008-08-26T19:28:00.000-07:00

Wow seriously I don't think I have updated my blog so many times in one week since maybe in January (our first hospital stay). Anyways this is the latest news....no "D" today which is good but I hope we aren't back to the cycle of constipation since he has no stool output today. I spoke with the doctor and he told me it isn't uncommon for dye contrast to still be in and that the dye contrast is what caused the "D" he had over the weekend. I am certain it is out now because we have no more "D". SO now the plan is start back on the senna laxative and tonight just de-gas him again (insert the rectal irrigation tube and take out). I am hoping now we can get this bowel management program a try. Oh and I found out little tummies laxative is gluten and dairy free so we will possibly switch to that after I run out of the pedia-lax strips.

The culprit is......

2008-08-25T21:56:00.000-07:00

Well today's xray showed he is full of gas and still has some of the dye contrast there which is most likely why he has been having "D". Which I should add has gone on all day today as well. Not to sound gross but this is pure liquid coming out. Anyways doc said no lax or enema today but to just place the irrigation tube in to see if that relieves some wind. Sure enough it did we got quite a bit of gas out of him. He still is not back to his old self on eating but hopefully that will pick up soon. It actually really bothers me that dye contrast is still in his little body nearly 4 days later. I wasn't home when the doc called so I am gonna talk to him about that tomorrow when I call to give him the update. Other than all that he seems to be feeling ok. He was happy to be back at school today and he was also finally cleared to start back at his theraputic horseback riding program which started back up today.

Sunday, feeling a bit better

2008-08-24T19:37:00.001-07:00

Unfortunately the enema was little help. He began to vomit several times then fell asleep. Today he has been ok with no vomiting but diharriah and no appetite. Dr says back off for the day and let his body rest (no enema and no lax). At this point we think he may have caught something. We will go get an xray tomorrow to see what may be going on.

Not doing too well

2008-08-23T15:48:00.000-07:00

Well the day after disimpaction he did great. I kept him home from school because he vomited in the middle of the night and was still very sleepy, so sleepy he didn't even wake up until after 10 am. He was so hungry and all he wanted was Rice Chex cereal and rice milk, he must have eaten 4 bowls in a row, then he was hungry again an hour later and he ate pasta and more cereal. He did make a bm that evening and seemed to be ok, oh and we started pedia-lax (2 1/2 strips of it). Now Saturday he woke up with nausea, lack of appetite, and a very big tummy ache. All day he has not been his self. He hasn't eaten anything and is dry heaving all day. He obviously is not feeling well. I called the doc and he thinks that he may have over did it with the large amount of food and that the lax might be causing cramping. So tonight he wants us do an enema in hopes that will help him along. Poor thing I hope he is better by Monday so he can go to school. Only the 2ND week of school and he has already missed a day and a half.

Disimpaction complete

2008-08-21T21:36:00.001-07:00

Ok so he had his disimpaction today and it went pretty well. He was given versed before the gas so ofcorse he has been loopy all evening. He asked me a few times if I saw that man over there and ofcorse no one was there...a little freaky when I asked him to tell me what the man looked like....I sure hope it is his angel watching over him.

Anyways the poor thing was so upset today. I tried to send him to school but after less than 2 hours the teacher called me to come get him because he just wasn't himself...he had been crying on and off all morning. Well only a week into school and there goes his perfect attendance record, oh well.

So his surgeon did the disimpaction which I found out is basically a hospital grade enema but under a fluoroscopy with a dye contrast to make sure they get all the stool out. He said it wasn't as bad as the xray earlier in the week but it definitely needed to be done. One thing the doc mentioned that was quite puzzling to him is his colon has little folds (well everyone's does) but in Tyler it is only in the top half of the large intestine and not at all in the other half. The doc wasn't sure why they weren't there but he thought this could be contributing to slow motility. Anyways now the plan is to continue on Senna laxative (we are gonna give pedia-lax a try) and then get another xray on Monday. So that is it he has a clean colon now to have a fresh start to bowel management.

OR disimpaction scheduled for Thurs

2008-08-20T20:08:00.000-07:00

we are scheduled for the disimpaction in the OR with our surgeon for thurs 8/21 for a 1pm check in, 3pm procedure. I'll be able to give him b-fast by 7am and then clears till 1p. I think being at kindergarten till noon will help alot. I'll let you know how things go tomorrow. I made some cherry jello for him to snack on...hopefully he will eat it! NPO with clears sucks!!!

Xray Update

2008-08-19T19:38:00.000-07:00

Yesterday's xray showed stool throughout the whole colon but he is not distended or feeling sick or anything. He only seems to poop once a day (what hubby calls a good amount)but then he also leaks stool during the day. He is also on fletchers laxative which he takes 2 tsp at night. The plan for now is keep doing what we are doing and get an xray next Monday. I think he wanted us to come in sooner for a disimpaction but I want to try things at home first, I mean he is not (IMO) showing any signs of an impaction at all. Basically what I have gathered is a disimpaction is something they do in the outpatient OR. The doc will basically clean him out under sedation and then we will go home. It is not at all uncommon for this to happen to Hirschsprung's kids. I just thought besides the leaking of stool he was doing pretty good. I tell you the colon and digestive track is a never ending battle with it's own brain!

Colon Issues

2008-08-15T18:40:00.000-07:00

Well for those that don't know it we are continuing to have issues with the colon, well kinda just small setbacks. So he's been on fletcher's laxative for a week or so now and it has been working ok but he was still having some leaking of stool. So doc ordered an xray on Monday and it showed there was a good amount of stool in his lower half of colon. And actually that night I'm sure it came out....anyways the doc had us do enemas for two days and then another xray. Well that xray showed a good amount of stool in the 1st part of the colon which made since to me because he hadn't gone well that morning but the doctor doesn't want to see those results either. So now for the weekend we up the laxative and back for another xray on Monday. Oh and we finally got an appt with the urologist, unfortunately he can't see us for about 7 weeks. Our surgeon knows him and is gonna call him to discuss Tyler's issues in hopes it can bump us up sooner.