9 Months

Nine month stats:  weight: 18 lbs 14.8 oz--23rd percentile.  He is in the 7th percentile for height and 27th percentile for head circumference.  Most MSS children don't grow very tall, so it is not surprising he is shorter.  In November he was 1% for height, weight and head circumference--he has come a long way in just a few months.  He had a huge growth spurt after coming home from the hospital in January.  Whether it was due to the change in formula or the addition of the ventilator, we are not sure.  It is probably due to both.

We also received the results from his latest blood gast: 47.  That is the best his CO2 levels have been!  They are keeping his ventilator settings the same for now.  I also made the appointment for his next CT scan--and I was wrong, they will have to put him under anesthesia for the scan.  I always worry when he is put under, even though he hasn't had any adverse reactions yet.  

Also in the disappointing news department, we found out that Kai will most likely not qualify for ten hours of nursing at night--he (most likely) just isn't high enough on the grid score.  I was looking forward to a solid eight hours of sleep.  As it is, I am lucky to get in six hours on days when J doesn't come home.  When the nurse gets here, we have to fill her in on what is going on with Kai.  Sometimes it is quick, other times it takes longer.  Then I have to get ready for bed, unwind, and do anything that I was unable to do during the day (ie out of sight of Kai).  Usually by the time I actually make it into bed, an hour has passed.  Then in the morning, I have to get up early enough to take a shower (or forgo a shower until J gets home that evening--and trust me, that has happened many a time in the interest of getting just a little more sleep) and get ready before the nurse leaves.  Another hour down.  That leaves six actual sleeping hours (provided Zuri doesn't wake up during the night or the nurse doesn't wake me for some reason and I fall asleep right away).  By the time the weekend comes, I am exhausted, and J usually lets me sleep in so I can catch up on sleep.  There have been a couple of times that I have slept until almost noon!  Needless to say, I was really looking forward to the ten hours.  We will know for certain in the next week or so.  

For some good news, we are all set to begin our respite hours beginning in March!  We have March's hours planned out and have a weekend getaway with just J and me!  I am so excited!

Additionally, we finally got our disabled plates for Kai.  I know, it seems like we should have done that long ago, and that is true, but we haven't had the opportunity.  We dropped off the paperwork at Kai's doctors office forever ago but haven't had the chance to pick it up and then get it to the DMV.   At the trach/vent clinic, Dr. M filled out the paperwork and handed it right to me, and yesterday I was able to make it over to the DMV.  Little things can make life just a wee bit easier!