Updates!

My back has been bad, so I can't sit long enough to post something. It is getting better, so I thought I would update you all on the boys.

Drew saw Dr. Brockmeyer, a neurosurgeon at PCMC (Primary Children's). Drew's cervical spine is quite interesting really. Most of his anomalies are different, but not an issue. The one that is concerning is his 1st vertabrae. It is supposed to be a ring, but it is 2 pieces. This prevents the proper connection between the skull, 1st and 2nd vertabrae. People are supposed to have no more than 2 mm of movement when they flex and extend their necks. Drew has somewhere from 8-10 mm. So, he is having surgery March 9th to fuse the skull to the 2nd vertabrae. This is a bit of a worry to us! He will lose around 50% of his side to side motion in his neck. However, the risk of injury without the surgery is also a huge worry to us. It really is a rock and a hard place. Please pray for Drew (and for us!).

Kael was able to get a spot in the FUN Clinic (Follow-Up Nutrition) at PCMC with a gastroenterologist named Daniel Jackson, so we did not have to go all the way to St. George. That was a blessing with my recent back troubles and with Drew's recent ear infection that just would not go away (fever, malaise, etc). Dr. Jackson wanted to increase Kael's meds and add a new medication to empty Kael's stomach faster. We will return in a month to see what has happened. If Kael's reflux is managed- hurray! If not, all that is left is surgical management with a procedure called a Nissen fundoplication. Of course, there are other things to consider- he aspirates when he eats. Kael is seeing the ENTs again on March 3rd for a test to see if there is an anatomical cause for his aspiration. If they can not find an anatomical cause and Kael has not "grown out of it" by our follow-up with Dr. Jackson in April, we may be looking at a G-tube. Of course, the next steps would be to scope Kael's esophagus and stomach to see if there is an allergic cause for esophageal irritation or other anatomical issues. They would also do a pH probe to prove/disprove reflux. So, basically, if the medication does't control the reflux, our only recourse is surgical (they will just decide which one based on what happens with the aspiration).

I registered Evan for kindergarten the other day. That was exciting. I am also anxious to see how he will function in a mainstream classroom. They will do some testing with the school psychiatrist and both his preschool teacher and myself will fill out evaluations. We may seek a medical diagnosis. I hesitate to label him, but unfortunately, it is the only way to be sure he qualifies for school services! And, I just learned from a friend with and older child with the same issues that they would not let her put Asperger Syndrome, only Autism (even though his diagnosis was Aspergers). Ugh... that makes my decision harder. So, we will see what comes of this whole transition process.

Robby will be three in less than 3 weeks. He will get to go to preschool a couple days a week with Evan as a "tuition student". I think he will enjoy it and it will be good for him. Besides- two days a week where it is just me and Kael for 3 hours? Yipee! :)

Thanks for all your love and support! Oh, and I promise more pictures very soon....

If it weren't happening to me, I wouldn't believe me either!

As if Chromosome 22q11.2 Deletion, von Willebrand's Disease Asperger Syndrome, severe allergies (x2) eczema (x2) and asthma (x2) and some unidentified IBS-like thing weren't enough, Kael has been diagnosed with dysphagia, silent aspiration, and GERD. Now, they have very little if any clinical evidence of the GERD (gastroesaphageal reflux disease), but they are using that to explain the dysphagia and the aspiration. Nice, huh. He has a feeding tube in his small bowel (NJ tube) that has to be on a slow continuous feed. If he pulls it out (what almost 5 month old wouldn't) it has to be replaced with x-ray at Primary Children's. We spent almost 4 day as inpatients at Primary Children's with no significantly new information. The GI doctor who has never actually seen Kael (he has speken with a doctor who has consulted with the NP we regularly see) has decided he doesn't need to see Kael, exam him or scope his GI tract to determine what is going on even though he himself said that he has never seen a baby with GERD bad enough to be sent home on NJ feedings. He has also determined that the GERD must be caused by a formula intolerance even though Kael has had these symptoms since birth and has only been on formula for 2-3 weeks. Way to go, Captain Clever! Ever try TALKING to the patient (or his parents) for an ACCURATE history or symptomology? Now, I am not saying unequvically he is wrong. I just think I would feel better about it if he had actually examined Kael and done some tests that at least sort of indicated GERD before he vehemently backed his diagnosis.

So, needless to say, things ha ve been crazy and I have been stressed. My sainted mother took off work and drove 4 hours with my sainted father to help with the other boys, etc. And my very sainted little sister helped the weekend before my parents got here and a few days after they left. It is hard to do anything with a crabby baby. It is REALLY hard to do anything with a crabby baby teathered to a feeding pump! LOL! So, with awesome family and friends, we are getting by. Seriously, my mom, dad and sister folded about 3 tons and washed and folded another 2 tons of laundry and helped clean the house in general as well as paying loads of attention to the big boys so that even after we were discharged, I could tend 100% to Kael and get him settled into a routine at home.

Although things are still far from where they need to be, Kael is starting to slowly gain weight. He is up to the 6th or 7th percentile (catching back up to his height at the 87th percentile) and he sleeps ALL THE TIME. (He used to sleep 7-10 hours out of 24- newborns are supposed to sleep 20 out of 24.) Just keep praying we can figure this out, the sooner the better!