Medical Marathon

The last two weeks were chock full of doc's appointments for us.  It began Wednesday the 16th with a swallow study for Christine. For the test Christine drank and ate food w/ die in it while getting xrays to see where it was going (this is being done because she sometimes gets a rattle in her throat after drinking).  The initial findings were somewhat as expected.  They saw some small micro aspirations and recommended thickening her liquids (which we have already been doing).  I was comfortable with those findings and was having a pretty good day until the specialist called me later with some unexpected news.  She said she looked over the scans with her supervisor and they felt that Christine is actually having trouble even with the thickened liquids and they are recommending a g-tube.  She called Christine's pediatrician and who seemed to be less concerned than the specialist because Christine has not had any respiratory problems and is growing fine (not underweight).  Isaac reassured me not to worry about it until we talk with the pediatrician about it more (should do that by Friday at the latest).  But I was kind of freaking out a little bit.  I feel like this would be a big setback for Christine developmentally.

I saw Christine's primary physician on Friday (for Nate's well visit) and talked briefly about the swallow study and Tuesday Christine saw a developmental pediatrician at Riley North. Thankfully, we're all in agreement that because Christine has had no history of respiratory infections, breathing trouble, or weight gain issues we are not going to pursue a g-tube.  The developmental ped said there are obviously risks either way but that he saw no reason why we should not continue doing what we are doing, just "proceed with caution".  We'll keep an eye on her growth, thicken her liquids and make sure she continues to eat well .  Its probable that with continued therapy to work on her oral motor skills she will out grow this.  I am relieved to say the least.
We were previously using baby cereal but since the swallow study we have been using "Simply Thick" to thicken Christine's liquids.  We have noticed a decrease in the frequency of her little throat rattle.  And an increase in an effective cough reflex.  We are pleased with these changes but will continue to monitor her feeding situation.  Please continue to pray that this resolves itself and does not become a bigger problem down the road. 

Nate's well visit was uneventful (in a good way) compared to our other doctor's appointments.  He went through the motions of the eye exam (he has 20/25 vision), physical exam, he demonstrated his strength (what boy doesn't like to show off his guns?) and told the doctor all about what he is learning in school, his hobbies, etc.  As suspected, Nate is a pretty healthy, growing boy and there is nothing alarming or concerning going on with him.  Thank God!  I have enough going on with the other two to keep me busy!

Christine saw genetics at Riley on Friday the 25th. We waited 10-15minutes in the waiting room.  Then a nurse took us back and weighed and measured Christine and showed us to an exam room.  Another 10minutes go by.  The intern comes in and asks the usual medical history, family history questions.  She also does a physical exam of Christine.  Then she goes out to "staff" with the geneticist. Another 20-30 minutes go by.  The doctor comes in and asks some of the same questions that the intern already asked (did they even discuss Christine at all before he came in?).  Then he proceeds to ask questions like: "So having two special needs kids, do you feel like its your fault?", "Do you feel guilty?", "Do you blame yourself?", etc... I was fine up until that point and I lost it.  I was teary and sniffly the whole rest of the appointment.  The doctor said that he is assuming since two of our three kids have a similar condition that its probably an autosomal recessive trait and Isaac and I must both be carriers of whatever it is.  If that is in fact true then if we were to ever get pregnant again the baby would have a 1 in 4 chance of having the same thing that is causing Joe and Christine's delays.  The doctor did not recommend doing the same blood tests that Joe has had done because he assumes they would come back with similarly unhelpful results.  So, he and the genetics doc that Joe has seen in the past will be putting their heads together to assess what tests have already been done and seeing if there are any others that they recommend doing on the kids and/or Isaac and I to try to get some answers.

Last but not least, Joe saw a physiatrist on Tues the 29th. We have never been to this doctor before but she came highly recommended from one of our First Steps therapists.  When we first got there we went through the motions of all the usual stuff: weighing, measuring, medical history, etc.  Seeing as this was my fifth doctor's appointment in two weeks I kind of was on a roll.  I was answering questions that the nurse nurse who was doing our intake hadn't even gotten around to asking yet.  She stopped and asked me if I was in the medical field.  HA!  She said I sounded very knowledgeable and comfortable with medical terms that most parents are not familiar with.  I told her I had been around and had had a lot of appointments lately.  She said it is great that I am this involved.  I thought it was part of the deal, I never thought about being any other way.
Anyway, finally the doc came in.  If the comments from the nurse had at all gone to my head the doc brought me right back to reality.  She did a pretty thorough exam, she checked his range of motion, watched him hop around, watched him take a few steps with my help, got to hear him scream when he decided that he was done and wanted to go.  She wants xrays of his hips because one side seems a little longer than the other.  She said she might want another MRI, but not until she has seen the films from the last one (which was almost four years ago).  She wants Joe to have a hearing test.  And when we come back to see her later in the summer she wants to see Joe with all of his equipment, ie walkers, orthotics, etc.

Obviously we have a lot going on.  Joe has two more appointments coming up in June in addition to the "homework" just given to us from these doc's appointments.  And since Joe does not qualify for summer therapy services through the school he is going to be starting OT and Speech at a local pediatric rehabilitation center.  We also just found out that one of Christine's First Steps therapists is changing jobs and we will be having to find a replacement for her.  Our schedule just keeps getting busier and busier.

Please continue to pray for my children's development.  We still sometimes pray for them to grow strong and catch up.  But usually when we pray at bedtime Isaac will pray for "Joe to learn to walk and talk soon" and for "Christine to crawl and learn to talk".  Our God is a big God and He works all things for His glory.

All things work together for the good of those that love the Lord and are called according to his purpose. Romans 8:28