Mitchell Cragg

Born: December 16, 2004 

"Mitchell is really just a typical boy who likes to play and have fun just like any other child. I want medical professionals and healthcare providers to look at his video and learn that his life is worth saving. Our doctors have been incredible. They are so supportive and have always been cautiously optimistic about Mitchell, it makes a world of difference." Link to Video Montage with Video Clips Mitchell was born 3 1/2 weeks early. Mitchell was born with a cleft lip and palate, extra digit and cardiac dextroposition. Because of these findings, the doctors thought that Mitchell had trisomy 13. A few days after he was born, the diagnosis was finalized; Mitchell was diagnosed as having the mosaic form of Trisomy 13. It was a long 2 months in the NICU, but finally we got to take Mitchell home.

Wow - it has been way too long since an update. Mitchell is now 2 yrs 9 months and doing terrific! We have started school again-he sees a therapist 4 days a week-two of those days are in a classroom setting with 6-8 other children.

He loves school and aims to please though at times gets tired of being "told" what to do. (typical 2 year old) Mitchell's language skills are improving greatly. As of now he has 35 signs. There are rarely times where we wonder what he wants - he communicates very well for not being able to speak. We are working at using a speaking valve over his trach so he is able
to produce sound--at times Mitchell seems to blurt out words surprising all of us. (he has said walk, water, and orange)

Mitchell is walking well and is busy all the time. He enjoys playing with the cat and loves playing ball. Mitchell's fine motor skills seem to be getting better as well.

Mitchell has made some pretty impressive connections and it has really started to get us excited to see really what is going on in his head. He signs his nightime routine-if I say it is time for bed, Mitchell will sign "brush teeth and books." He has also recognized a truck that looked like dad's at the grocery store and signed "dad". It wasn't his dad's truck-but looked identical. I was shocked to see that he was so observant and knew what color the truck was!! He is a very smart boy!

Medically Mitchell has done great in the last year. Once again he has not had to stay the night in the hospital. We continue to have nursing care about 5 nights a week and this helps a lot. They are able to keep tabs on his lungs and we typically try and catch those pesty colds before they turn into pneumonia. Our plan is to get a scope done this next spring to see how Mitchell's floppy airway is doing. We try to be optimistic, but we both feel Mitchell will have his trach for a few more years. We are fine with this-though the trach brings more work--it is clear that it has saved his life as well as helped him gain grounds developmentally.

Mitchell continues to wooo the medical community. It is such a great feeling when you can see your little boy impress a doctor who has been practicing for 25 years. (he did this at the Mayo Clinic this year)

Mitchell also continues to be the happiest little guy I know. He waves to everyone and always signs "thank you".

Here are a couple of new pictures-One is of Mitchell with Dad before the first football game of the season. (Mitchell's first too) The other one is Mitchell on the first day of school.

Take care,
Paul, Katie and Mitchell
kmcragg@cableone.net

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Update June 28, 2006
Mitchell turned 18 months on the 16th of June! Time has gone by so quickly! Mitchell is doing so well in all areas. Health-Mitchell has had a cold here and there, but overall has been pretty healthy. We have even started to downsize his trach. The doctors have said that a realistic goal for getting rid of the trach is possibly next summer. We are very optimistic about this and yet are cautious as well. We don't want to get rid of it until we are certain he will do okay. Right now he only uses his CPAP when sleeping and we are actually hoping to start weaning him off of that as well. At this time Mitchell is officially off the "watch weight" list. Of course we'll continue to monitor his weight but no longer have to count calories. He has jumped from being 10% for weight to 40%.

Developmentally-Mitchell continues to make progress. He just recently took 4 steps on his own! I am hoping that he will be walking by this fall. He still struggles with fine motor skills however he is still making steady progress. Speech is an area that he struggles the most and this is due to many "strikes" against him...trach, cleft, and hearing loss. We sign with Mitchell but he is very stubborn and isn't signing as much as we'd hoped. He can vocalize quite a bit for a child with a trach. He will say "up" pretty clearly and just said "ball" the other day. Mitchell has shown that he wants to be verbal, so we are working hard at that. However, reality is that he needs a way to communicate right now and so we are really starting to push signing and also using pictures for communication. Mitchell continues to be a very happy little boy.

Though we have been through so many ups and downs-just looking at his smiley face makes every "tough" moment worth it. He amazes us everyday with his hard work and motivation. He is one happy little boy that has a contagious smile.

12-29-05 Update on Mitchell,
We had our 1 year appointment today and we got the NG tube out!! Yah!!! Now we have to re-check weight in 2 weeks and hope he is gaining so we can keep it out. Hope you had a great Christmas!!
Katie

11-1-05
Mitchell has had numerous surgeries including; hernia repair, surgery to repair pyloric stenosis, tracheotomy, and cleft lip and palate repair. Mitchell is currently doing very well. He is trying to crawl and we are working hard at sitting up. He has a mild to moderate hearing loss and has hearing aids to help him with this. We are very pleased with how Mitchell is growing and developing. We are closely monitoring Mitchell's breathing. He has a trach due to severe laryngotracheobronchomalacia. Mitchell is a blessing to our family and seems to have a way of touching everyone he comes in contact with.

Katie Cragg kmcragg@cableone.net

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