I get asked these questions a lot and I am so thankful that I do! I am so thankful for all the people that pray for our son and for our family. Above you see two pictures of "Little D". One is on "gotcha day" when we were getting him dressed to leave the institution (he was a sick little one). We have other pictures that show just how sick he was but I think I will never feel comfortable with sharing those online. The other is of him at the Children's Hospital in Denver where he was for about 3 weeks for failure to thrive. A year and a half later and so much has been crossed of my list for his medical care and so much has been added. It is almost a never ending cycle and I am so blessed to be a part of this boys life! I am so thankful for this life. I think most every parent of a child with special needs will tell you that yes, it is very hard work...yes, it is draining physically and emotionally... and yes, some times you have to fight with your whole heart to get the proper medical care for your child. I think most every parent of a child with special needs will also tell you they are the ones who are being blessed. I cannot begin to tell you how Dmitriy blesses my life and what the Lord has taught me about Himself (and myself) through my son.
When and What are D's next appointment?
Here is the list for the next couple of months. Some of these are scheduled and some we are waiting on the referrals.
1. Cleft Palate team... for a second opinion. The other team has doubts about repairing the palate since he is non verbal. They say the main reason they repair the palate in infants is because we assume they will eventually talk. Because Dmitriy is seven and non verbal there is a small chance he will have speech. However, his pediatrician and I disagree. Because of the palate of the hard and soft tissue he gets chronic ear infections (about once a month typically). These ear infections effect his hearing and to a child that has no sight, well, we need the best hearing possible. He already has some hearing loss so preserving his hearing is so important. Also, he does very well at keeping food from getting into his nasal cavity. However, occasionally he struggles with this.
2. Gastroenterologist... There is a long list here of things that cause him discomfort in the gastro arena. Dmitriy had a scope ( endoscopy ) at Children's hospital Colorado but they want to do another one here. He has started to loose weight, down 4lbs today since his last visit with the pediatrician which puts him almost under 30lbs at 7 1/2 years old.
3. Audiologist... He had a sedated hearing test last year and it is time for yet another one.
4. ENT...Because of the constant ear infections they want to try replacing the tubes in his ears.
5. Dentist...under sedation...we are/were waiting to see who will be doing his cleft palate surgery since a dentist will work with them on his dental care. His teeth upon arrival into the states were hum...well, you can imagine never having a teeth brush put into your mouth for 6 years. However, with proper teeth brushing his teeth are so much better. They do need to sedate him for a cleaning and to do x rays to make sure there are no cavities or infections.
6. Endocrinology....Dmitriy had a bone scan (to see how his bones are aging) and had his growth hormone tested...the results were both abnormal. We have no plans of giving him artificial growth hormone but were recommended to this endocrinologist to gain some wisdom with the results of that testing.
7. Ophthalmologist...we are pretty much done with eye appointments for Dmitriy and I am so peaceful about this. This should be his last one unless a problem arises. We are pretty much going to go over what the cornea specialist said and said our goodbyes...I think :)
8. Ocularist... (artificial eye for the left socket) We have no plans in the near future of starting the process for getting Dmitriy a prosthetic eye. His ophthalmologist recommended for us to meet with him to discuss when/if we will do this in the future.
How can you pray?
Please be in prayer that all the referrals will go through to have all his care transferred to another Children's hospital. In speaking with his pediatrician today, he did not think that would be a problem and encouraged it 100% for our insurance to approve it.
Please pray also that we can get as many of these appointments behind us before we start back with school.
Please pray we can be a blessing to our son.
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