|Fresh Air = Sleepy Girl!|
|Camping = Double Stroller Time!|
So much has happened since my last update on Christy that I can't post it all here, but here are some highlights, and then I'll tell you about her/my first ever sleep study plus updates on her current challenges!
|"Wake Up Gi-Gi" (Carese's name for Christy!)|
Then we left on a long campout. Our church has a campout every year, but we got up early. This year we arrive on Monday, and the official campout starts on Friday. Christy did amazingly well at camp, adjusting quickly to the outdoor life.
The only problem was that her crib was right next to my bed. Before the campout I was aware that she wakened about once a night and at home I would check on her when I heard her rocking her crib (literally) and usually it meant her nose was stuffy. I'd put a little coconut oil on her nose at the opening of her nostrils to help soften any crusties, and apply some essential oils for nasal congestion and calming and she'd rock herself back to sleep. I tried rocking her to sleep, but for so many years she has been calming herself to sleep, that if I try to rock her, she wakes completely up and thinks it's time to play....doesn't work at all to put her to sleep again.
|Christy's bed right by mommy's|
Head = sleep deprived mommy!
|Christy doing table time, playing with blocks,|
as part of her daily therapy/play time at home.
|She does like to explore her world using her mouth!|
|Rachel cutting Christy's nails - Christy does not like this,|
but she did give me this great photo between her
complaining and squirming to get away!
The first week of September was her swallow study. She did so well, cooperated so nicely, that we were able to get very good information about her swallowing...at least very accurate information. Christy has major aspiration problems. She showed laryngeal penetration (fancy term for food going down the wrong tube) on all thicknesses, even pudding. There is no term for thickness thicker than pudding, so the speech therapist referred to it as paste. This is not good, not good at all. Both the speech therapist and Christy's pediatrician are recommending that we place a G-Tube to aid in getting fluids into her, but we are/were hesitant about this.
|My happy girl - in the waiting room at|
Seattle Children's Sleep Clinic in Bellevue
|Christy all ready for bed - waiting to get hooked up|
for her sleep study. Such a big crib....made me sad
to think of all those years she spent alone in a crib!
|My beautiful Bulgarian Princess!|
On Monday we went to the Everett Children's clinic. After reviewing Christy's history, and check Christy's stats that day (wide awake and active her O2 stat was only 95%), she said they she was content to wait until after Christy had her tonsils and adenoids out to see if that corrected her sleep problems. I mentioned that the ENT had called for the sleep study to be done before the surgery so they would know what they were dealing with when she was sedated. She checked and I was right, so she quickly changed gears and started talking about scheduling the sleep study. She said that they were scheduling into November, but that she'd put her at the top of the urgent, cancellation list. She said they would call me tomorrow. I got the call an hour later and they said they were scheduling into January, but that they had a cancellation for Wednesday night....I jumped on that one!
|The cool, light up welcome sign|
- doubles as a nightlight!
After check in, we were shown to our room, and on the way the nurse pointed out an area where there were drinks and snacks that were available to us for free (which I was unable to take advantage of, except for a cup of coffee on the way out - but it was pretty good coffee!). Then we got down to the business of filling out forms and getting Christy ready for bed. She looked so tiny in the big crib! She does not look like a 4 year old!
|"Watch this - I can do the magic table cloth trick!"|
|Yeah, not a happy Christy...|
|What does the hand say about the nasal canula? NO!|
They ended up waking her up completely and making her unhappy with them twice in order to adjust things (mostly her nasal canula thing). I got some sleep, but not much. I heard Christy stop breathing many time, but usually for less than 10 seconds, so I am really curious about the results. At 6 am it was wake up time (we had no choice and it was a bit shocking!). Christy was a wired mess and looked like she had been tumbled in a dryer overnight! It took a while for the nurse to removed everything, but overall, Christy just hung out and tolerated it all beautifully.....right up until I was washing her hair in the sink (no counter).
Finally we were ready. Christy still had weird substances in her hair, but I put most of it into a half ponytail and that hid the worst of the problems....what I really needed was some detangler or conditioner (the hospital provided baby shampoo).
|Christy ready to go home - did the best I|
could with her hair as I couldn't get all the
gel out without traumatizing her!
So I'm editing to add that I just found out that the Sleep Clinic called yesterday. I was able to talk to a nurse about her sleep study results already. Christy does have obstructive sleep apnea. Her O2 stats were on the low side, but not of urgent concern. The study showed that she wakes often, but did experience REM sleep and deep sleep at least for little while. Thankfully, they believe that her tonsillectomy might correct this problem. So we are moving forward with scheduling her surgery. She will be having a tonsillectomy, adenoidectomy, dental work, MRI and G-Tube placement all at one time so she only has to go under general anesthesia once (she was intubated for 5 days following her open heart surgery, so there is concern). I still have many phone calls to make!
Wow - I feel like God gave me a cushion of time with Christy without any major medical issues. That cushion is now gone. It's time to get down to business. Time to address her issues and work to make her life as pleasant as possible and enabling her to grow and develop and sleep (sleep is so important for growth and development, and so is proper nutrition and hydration)!
|All Tuckered out - taking a nap on the way home!|
I am excited about what the future may hold for Christy. She has been doing so well - learning new things, actively exploring her new world and interacting with her new family. Just think how much better she will do when she is not being hampered by her health issues!
I am also overwhelmed, but I've had two of the most incredibly busy weeks of my life. Next week the only thing on my calendar is Christy and Esther's therapy sessions on Tuesday. But that might change - I am making the phone call today about Christy getting a G-Tube.