What a week so far!

It has been an overwhelming past few days with two doctor appointments. First we went to Kennedy Krieger Institute for a developmental pediatrician to assess Wyatt. It was so nice to arrive there with free valet parking and a welcoming front desk and swift friendly service. Very customer friendly. However, the calmness stopped there:) The doctor was very nice and Wyatt did fabulous! He took a test and followed directions enthusiastically! I wish I had a camera to video him taking this test. He stacked one inch blocks, dumped something out of a container, put pegs in holes, and when asked to draw a circle and line (which he scribbled), he made a funny sound just like the doctor. He was soooo cute!! He performed at 24 months,on target and 21 months for motor skills. I am so proud and the doctor was shocked by how well he did for everything he has been through. She said he was a pure miracle given all the surgeries, brain bleed, and vocal cord paralysis. She said she never saw a person with IVH grade four bleed perform like Wyatt did!! Then came the part of her recommendations. She wants to act aggressively with Wyatt. She wants to enroll him in there INTENSE feeding clinic where there is a high success rate, but kids are force fed and it's very traumatic for the parents. It could be inpatient or outpatient. Then she wants us to stop Infant and Toddlers and start using there PT, because she thinks Wyatt's refusal to walk is because of low muscle tone, but it is also behavioral and if he is out of his environment with other people, he may act differently. Finally she wants the caregivers- parents, nurse, grandparents attend behavioral psychology clinic. As we were leaving, the check out lady made appointments for all of these for us plus a follow up with this doctor one year from now... my calendar doesn't even go that far!!! Wow!! talk about overwhelming. Wyatt cries when we pull into the parking garage of any doctor. EVERY doctor's appointment is traumatic for him.... even the one with his friendly pediatrician. I feel like we are at such a great place now. Wyatt loves his PT lady who comes to our house. He is talking so much, pretending to eat at every meal, and we are making baby steps with getting him to stand (we are conquering kneeling now:) I always want to do what is best for Wyatt, but with working, Chloe going to pre-school, and normal life stuff, I don't know if I could go to Kennedy Krieger on a regular, weekly, basis. Don't get me wrong, I would if I knew for sure it was best for Wyatt. People from all over the world travel to Baltimore to go to KK. I have been googling it and people from as far as Australia come to participate in their 8 week feeding clinic. So I told myself to attend the first appointment and see how I feel. I refuse to allow Wyatt to be force fed and scream and cry. I am an proponent for the loving and caring approach in the security of our own home rather than an institution. But I will go to the appointments and see what happens. I just feel like we are starting all over again and I strongly dislike explaining Wyatt's history to a new set of doctors. I feel like I am opening a can of worms!! We have a set of doctors and they all know Wyatt and we like them. However, I don't want to shut the door on KK just out of convenience. So what would you do? I would love to hear all your comments on this. Oh yeah, two of the appointments is the same day Chloe has her first school field trip!!!

Today we had our GI appointment with Dr. G. After waiting for two and half hours, we were finally seen. I toke Chloe with us and both kids were wild! Scooting everywhere!! Dr. G was very happy with Wyatt's progress. He is in the 60 percentile for weight... he started below the growth line and now he is in the middle. Now we have to watch he won't gain too much more weight... I thought I would never say that!! We always tried to prepare him for surgery and encouraged weight gain. Now we want to stay steady. He would also like to start bolus feeds at about 40cc at a time and increase his continuous feeds during the night, so we don't have to feed him as often during the day. We also can give him pedilyte or water to stay hydrated instead of formula after he has met his daily intake of about 1200cc. Basically it's the first time he did not give us a prescribed plan. We can do what we want as long as he gets 1200 cc a day. He also said that he did most of his training at the feeding clinic at KK and he did say it's extremely intense and hard on the parents. He said Wyatt is doing fine as is and it's totally up to us of what we want to do.

My priority for Wyatt now is letting him be happy and healthy in his own environment. I want to focus on his PT and standing. We were in the hosiptal five times last year for respiratory illnesses and reherinations. We are finally at a good place and have not been in a hospital since last June (our longest stretch). After standing and walking, then I will work on feeding. But I also don't want to miss the window of opportunity either??? What to do??

Finally, I want to thank my friend Teaette for hosting a high school friend reunion in her brand new big house:)) I love my friends and Teaette and Nicole have been with me through the thick and thin! Here are some of the pictures of all five kids together. Teaette has twins that are Wyatt's age- Taylor and Joey and a girl Haley who is Chloe's age. They had great fun playing with balloons!