Monday, March 11, 2013

Now we wait...

We drank the Children's Hospital kool-aid and we are not going back...like ever...Maddie was born at a traditional hospital in Denver stayed in the NICU and saw specialists and surgeons that were affiliated with that traditional hospital...I always felt like I was fighting and searching and having to be one step ahead of them...because Maddie was clearly not getting what she needed...one day I was reading a blog and heard of the Down syndrome clinic at Children's Hospital in Denver..then I began seeing it more and more on facebook...and I knew I had to get Maddie to people that knew...knew more...personal friends have been going to Children's in Denver for years but I did not understand the difference until I walked in to the Hospital...until I went to the bathroom and they had child size toilets...that the counters were all low so the Children are seen and heard...everyone...I mean everyone greeted Maddie first...and not just my insurance card...we were at Children's for 3 days and it was the most stress free visit to a clinic or hospital we have had...

Maddie so excited to be in Denver...NOT
our appointments began with Audiology...I was not sure if Maddie hears correctly...Maddie has selected hearing to the point that you just do not know if she is being 3 or if there is a issue...this appointment took approximately 2 hours and she was great...best of all they were great...they recognized she was getting bored and changed up the games to test...they never got frustrated and it was 5 pm in the afternoon...the results are in and she passed with flying colors...and that Maddie is in fact typical that she has VERY selected hearing and chooses who and what she wants to acknowledge! this is good...very good!

the next morning we were in the Down syndrome clinic...this was like a well oiled machine...we met with the Speech-Language Pathologist first and she was informative...general...but throughouh...I explained what we were interested in and she made recommendations on that...what threw me for a WHAT! was when she wanted to do a upright barium swallow and feeding evaluation...Maddie has not had one of these done since she was about 1 years old...she explained the difference between the esophagram that Maddie has done monthly and the swallow study...it was during this appointment I realized the difference in care...they want to understand Maddie's issues with food and swallowing...and that they are two separate things...I would not describe Maddie as a picky eater...but I would say she has difficulty getting food to her mouth, chewing, getting food down to her esophagus into her stomach...all VERY different issues...each component is something we just need to look at to make sure we are not making her esophagus worse or that we are not putting her at risk every time she eats...not sure why we have not been doing this along...but the is part of the kool-aid...

initial diagnosis: Expressive speech disorder and Feeding difficulties & mismanagement...

then the PT appointment...this was FUN...I mean FUN! Maddie drove and rode a hot wheel bike, walked up stairs, and raced me and the PT down the hall...and Maddie played...with that...we talked and discussed Maddie...and lets just say Maddie is doing great...Maddie jumped and did all required movements...she said to give our therapists a high-five...and I agree...Maddie does need orthodox so they fitted and ordered them within that visit...I did not have to go to another office it was smooth...

then the Doctor came to see her...this was simply put -crazy informative...crazy comfortable...crazy hopeful...what I am saying is that this doctor gave time, thoughts and did not blow smoke up my ass...it was nice...he actually said that as he was reading about Maddie and thinking about her care that he did not know what to expect when he met her...that she was surprisingly more healthy then he thought she would be with all her surgeries...that he could not wait to put a team together and find solutions for her...this was like the heavens parted and sun was coming through the room...there was a doctor that wanted to help Maddie and her esophagus...all we have wanted was NOT to be driving in the middle of the night on snowy roads to Denver to be put in the hospital and maybe get care in a sufficient manner...with the feeding and swallow study this should help with what Maddie can eat and how we should feed her...currently her doctor thinks we should just take the risk and try new foods as Maddie wants them...GREAT in theory until its not...

initial recommendations: see the aerodigestive clinic, blood work- Celiac (IgA & TTG), CBC, Ferritin, Retic (iron tests)...

next was the sleep study...I have putting this off for a LONG time...I am not sure why...i was scared at the results...but I know I needed to get Maddie in there...Maddie sleeps alot...she snores awake and asleep...she mouth breathes...and she sits up and rolls...so I knew there could be some possible issues...this was intense to see all the wires coming from her...but she handled it like a rockstar and was a perfect patient...Maddie was put on oxygen when she dropped to 79...and we know she rolls...we are nervous about the results...but I know it was necessary...



now we wait for the results...and we take another turn in or journey of care for Maddie...I am excited and feel that we are not alone...that we are not the only ones seeing the issues...Maddie deserves the best...and I really feel finally we are going to get the best...yeah for stepping out of our comfort zone!

10 comments:

  1. That's awesome Kim! Good for you and Maddie! I'm glad you did it!

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  2. Yay! I'm so glad you had a good visit and feel happy about the care she received! She is so adorable with all that gear on, I'm so impressed since Lucas was crazy mad about it ;) Definitely would love to exchange some notes once you get her results!

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  3. You are such a great Mom! And kudos to Maddie for doing great during her sleep study, because I hated mine, a lot! And also, I got to talk to Max on the phone, melt my heart he did! He said, "I'm not afraid of Joseph because he's only one year older than me. If he were two years older, I would be afraid." Too cute:) XOXO

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  4. This is so cool! I'm glad you went and that there Maddie has a voice and that they WANT to help! We have a Ds Children's hospital in Oakland (few hrs from us) and I've always considered taking Sutter for the full evaluation...maybe one day!

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  5. I am so happy for you. I've been a silent follower for the past year (when I surprisingly became a new member to this amazing community). I have my own Maddie (but I'm her aunt) :) Great name. I'm glad the appointment went well.

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  6. That sounds like an amazing visit! I'm so glad everything went well!

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  7. This was really awesome to read!! I'm so happy that you had such a wonderful team of Doctors and Therapists working with you to help Maddie. Hope the results of the sleep test are ok.

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  8. Oh, I was so happy to read this and see the amazing care you received. Children's hospitals and speciality clinics really do have their act together and can make such a wonderful difference. I am so glad all went well. I will be praying for good results on the sleep study but no matter what I know you are in such wonderful hands now and all will be good.

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  9. I had tears in my eyes while reading this post...I am so happy you found someplace to take Maddie where they will figure out how to care for her feeding issues :-) Wow, what a relief that must be to know that someone wants to figure it all out!

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  10. Isn't the clinic great?!? Pat is amazing. Claire always has such a blast with her. :)

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