A Quick Update on my Girlies!

Christy was able to go home with Jessica  on Tuesday, the same day that Esther was able to leave ICU.  It took until late Thursday before Esther was able to come home.  We are managing their medication/breathing treatments and it is finally getting easier now that Christy is doing fine without the bigger pain med, oxycodone.  And by eliminating that one, she can also go without the stool softener and the antihistamine as she needed both of those to deal with the side effects she was suffering from taking the oxycodone!  Now she's holding her own on Ibuprofen and Acetaminophen.

Since Esther tested positive to Rhinoviruse or Enterovirus, we are keeping Christy in a corner of my shop, but as of today she also got to play on the floor in my bedroom (this made her VERY happy).

Life with a G-Tube is so much easier than with an NG-Tube, but the recovery/pain (but it's hard to tell what is tonsil pain and what is G-Tube pain) has been difficult.  But it's getting easier every day!

Here are some photos of the girls from last week:

Christy place - all her needs met in one place!

Esther waiting for Daddy to drive up to the hospital and bring us home!

A New First - Two Children Hospitalized at the same time....

And hopefully it will the last time....

For those of my readers that like the quick overview, here's what has been going on:

-All kids came down with bad cold within 5 days of first outbreak (starting on 11/5)
-Esther got the cough but had improved by day 4 (last Tuesday)
-Esther gets rushed to our local ER with respiratory distress Wednesday night and is admitted with Jessica staying with her
-Thursday morning Christy goes to Seattle Children's for her scheduled G-Tube placement/tonsils & adenoids removal, Esther improving throughout the day
- Friday morning Esther takes a turn for the worst and is sent via helicopter to Children's Hospital
and at the same time the Rapid Response Team was called in for Christy due to continued increased -need for breathing support. (Jessica goes in helicopter, Daryl drives down here)
-Friday afternoon Christy improves after some respiratory work and breathing treatments, but Esther ends up in ICU
-Saturday Christy is improved enough to be discharged, so we get a hotel for Jessica, Reuben and Christy (Jessica's fiance, Jon, brought Reuben with as a chaperon but ends up staying as support for Jessica).
-Sunday - Esther is finally no longer getting worse but is not improving either, Christy is brought to ER late in the day, but the redness/discharge is normal so they go back to the hotel.  Esther has another miserable evening and needs higher level of sedation to sleep.

Esther in the ER the first evening.

Almost two weeks ago Reuben came down with a nasty cold.  5 days later everyone of the children had it in some way, shape or form.  I took Esther to see the pediatrician on Monday just to play it safe, as she had gotten the cough and she has had pneumonia two times before.  He said she was doing well, but prescribed steroids to start the next day, but only if she was worse.  The next day she was better, so I did not give her the steroids, but continued doing breathing treatments.

Napping during per-op

That same day, Tuesday, we got the call to let us know what time Christy's surgery was to be (we were to check in at 10:45).  We talked about this cold (Christy had only developed a small cough over the weekend, but had seemed fine starting Monday), and they mentioned that Christy might end up being sent home if she presented with cold symptoms, so I got proactive and brought her in to see a pediatrician and get her opinion, and she said that Christy sounds and looked great.

pre-op, checking out her bracelets!

Christy had a rough night as she got a hold of Carese's pizza (she's allergic to tomatoes) and ended up being up a good portion of the night with stomach cramps.  Esther's breathing sounded fine so I didn't do the "every 4 hours" breathing treatments through the night as I had been since Saturday.

All set for surgery

Wednesday was a busy day with orthodontist appointments and packing for Christy's trip to Seattle Children's Hospital for her planned surgical procedures.  During dinner time, Esther began grunting.

After two breathing treatments she was still getting worse so I rushed her to the ER. She was getting worse on the way there even.  In the first little while in the ER she declined even further, becoming unresponsive to all but extremely painful procedures.  There was talk of sending her to Children's, but then she began to respond to their treatments enough for her to stay there.  Jessica stayed overnight with her so I could get some sleep before taking Christy to Seattle Children's Hospital for her surgeries(G-Tube, Tonsilectomy/adenoidectomy).

Chiling during Christy's surgery

On Thursday Christy had her surgeries and all went well, but was a long day.  Esther was back on room air and doing remarkably well.

Christy in recovery

Friday morning, Christy had been in a slow increase in the need for oxygen and it was becoming concerning so they call the Rapid Response Team (RRT). While the team of about 8 people were in our room, I got a text from Jessica that Esther had taken a severe turn for the worse and that they had no idea why and she was not responding to the highest level or oxygen that this hospital could give her.  Back to Christy - they made some changes, including just having her position changed, and she responded well.  But that time, I had been notified that they were preparing Esther to be fown to Children's via the medical helicopter.  Talk about overwhelming!  But God upheld me through even this.

Christy the next morning, just before they called the RRT

Later I actually heard the helicopter land and was soon able to go see Esther.  She was struggling and mad, but working so hard to breath!  Jessica went to be with Christy once she had given them Esthers recent history.  After about an hour or so, they moved Esther onto the floor (I got to ride on the bed with her as she wouldn't let me out of the bed), just 4 doors down from Christy.  Throughout the afternoon we were able to go   from room to room, but being very careful with hand washing as they were testing both girls for viruses.  Esther was presenting viral symptoms and Christy had some yellow junk come up when they removed her breathing tube after the surgeries.

Christy sitting up for the first time

Daryl has driven down after Esther left in the helicopter, and this was about when he showed up.  Being the Daddy's girl that she is, she lit up when she saw him!  By this time she had actually sat up a few times and seemed to be recovering nicely!  Daryl also got some snuggle time with her daddy, even though she was feeling so miserable!

Over the next couple of hours, Esther continued to struggle more and need higher amounts of oxygen, as well as struggling against using the mask.  So they called the Rapid Response Team to her room to evaluate her.

Snuggling with Jessica too!

It was decided that she needed to go to the ICU.  Soon she was transferred up there (I road with her in the bed again!).  In the end she was given in IV, placed on high flow oxygen and a sedative to help her deal with all the hard stuff of having so much taped to your face and attached to her.

AFter the decided to move her to the ICU
she actually calmed own for a little while

When she didn't have enough sedation she was miserable - she was getting ibuterol 24/7 with the oxygen, plus steroids via her IV.  These all worked to make her jittery, jumpy, angry and frustrated.  She wanted to tear everything off and throw any and all toys across the room.  She was miserable.  It took a continuous re-evaluating to keep the level of steroids right.  Friday night was a long night and I only got about 3 hours sleep, and not all at once.  Daryl watched over Christy so Jessica could get some sleep.

On Saturday, Esther had not improved but was no longer getting worse.  Christy was getting better and they had determined that she could be discharged.  Jessica's fiance, Jon, drove down We decided that the best plan was to get a hotel room and have Jessica and Reuben stay there with Christy and care for her there until We went home or Jessica felt competent to care for her in our busy home (post surgery is quite intensive care - pain meds around the clock, plus G-Tube site care and tube feedings plus watching for infection.

Esther in ICU - she looks so little with all equipment!

The logistics of getting Christy discharged and over to the hotel were quite overwhelming as some things needed to go to Christy's room, and others to the hotel, and we had laundry that needed to be done.  God orchestrated things so that I had just the help I needed. I had posted on the International Down Syndrome Coalition FB page, requesting prayer for our situation, and from that Heather Y was able to come and help me out!  We had never met, but she has a son just 3 months older than Esther who also has Down Syndrome.  We enjoyed sharing our stories and we found that both our kids were at Children's at the same time even!  She even brought some toys for Esther and some treats for me!  What a blessing and such an encouragement to know that God was orchestrating things for me in such an amazing and special way!  She also brought her 8 year old son and I enjoyed getting to know him - he was so sweet and so smart!

Having Heather with me worked so well as she could stay with Christy while I ran errands.  She also helped me move things to Christy's room (it was more than I could carry), and she also made it possible for Reuben to get dinner.  And then just when we really needed even more help, Daryl's brother and sister-in-law showed up with some nice things for Esther and myself (Starbucks Gift Card Yay!).  This enabled me to get Christy out - they helped me move out of the room, pick up Christy's prescriptions, get the car packed and warmed up and on our way!  It could not have gone better and it would have been a nightmare/extremely difficult to do it all on my own!  I arrived at the hotel just minute before Jessica and Jon did, so they were available to help get moved into the hotel room - another amazing providence as they had been shopping since noon and by now it was after 6 pm, and yet they arrived at the hotel at just the right moment!  Eventually I made it back to the hospital with a late dinner for Daryl and I.

That night Daryl stayed with Esther and I to enable me to get some much needed sleep once Esther was asleep (the most sleep in a night in over a week was not much, and interrupted often!).   Esther had a very difficult evening, and only wanted me.  She fussed and cried and yelled and got mad and was miserable.  Finally, after midnight, a does of tylenol (I think she gets headachesand a higher level of sedation finally enabled her to sleep, which meant that I could sleep.  Somewhere around midnight I lost it was was crying hard.  Esther was starting to settle down then and she noticed that I was crying.  She started patting my arm and saying to me "it's OK, it's OK" - well that just made me cry harder it was so sweet and touching.  She is so loving and caring so it's doubly hard to see her be so sick and feeling so miserable!

Esther Monday morning, finally sedated enough to sleep

Sunday was another day of Esther staying the same.  No improvement, but no regressing either.  She had a difficult morning and evening again.  Daryl headed home just after dinner so he could return to work on Monday.  It was again after midnight before Esther was able to sleep, and it actually took adding a second/different sedative.  Having had more sleep the night before and also a nap, helped, but it was still  long, difficult evening.  Christy ended up with some redness and discharge and Jessica was having trouble managing her pain, so I had her take her to Children's ER to have her looked at.  They said this was normal, but to watch for it worsening.  She went back to the hotel with Christy and they both had a relatively decent night - Jessica has to get up at least every 3 hours to give pain meds, but thankfully they are given through the feeding tube so Christy doesn't have to be woken up!

This morning Esther was noticeably improving, but Christy had a rough morning.  But by adding the third pain med back into her routine, Christy was able be comfortable.  Esther was having time of being upset, but she was able to rest comfortably while Reuben stayed with her while I went out and did some shopping.

When I returned, she was fine, but then she started being miserable again, they upped her sedation but it didn't help, it was getting worse.  Then the nurse checked her IV (which had been fine just 45 minutes before) and the IV had come out of the vein and had begun to infiltrate into her arm - ouchies!  So the doctor came and decided that Esther was ready to go to just a nasal cannula with getting her ibuterol via inhaler.  She has done fine!  I even got to give her a sponge bath and she got to drink apple juice (she got a feeding tube yesterday as she hadn't eaten since Wednesday and she wasn't allowed to eat or drink when on high flow oxygen or she would risk aspiration).  She perked up like nobodies business!

Soon after that we got a visit from Child Life and she asked how they could help us get Esther more comfortable.  She was able to bring a portable DVD player with some movies that she had not seen in while, including Toy Story 3!  This did help her to calm down.  They also brought a cloth doll which she has enjoyed holding.

Esther since then has had very little interest in sleeping, plus they are doing her Ibuterol every hour.  I was able to sleep from midnight until 4 am, but found out that Esther had only slept a little over an hour, but had been content to just hang out in her bed while I slept.  Since then I've been letting her watch movies.  She is still working hard to breath, but mostly just breathing fast and not so much hard work as her airway is much improved, but can be on room air while she is awake.  She is still shakey and has not shown interest in getting out of bed, thankfully.  She prefers the bed over the recliner too.  She has even eaten some jello and continues to drink apple juice so I think they might let her try some real food for breakfast and if that goes well, she will be able to have the feeding tube out!

So today, Jessica is taking Reuben and Christy home, and if all goes well, Esther will go out out ICU and should be going home Wednesday or Thursday!

This has been a most challenging week for all of us, but God has given me grace and strength for each moment.  Even though at times I felt overwhelmed and cried, comfort and strength to go on was ready and waiting, I just needed to turn to my Lord in Prayer!  Please join me and others in praying that Esther will go home soon and that Christy will continue to improve and need less pain reliever soon and that our adjustment to caring for these two at home (and the long drive home) will go well!

I will try to post again once she is on the floor, but it might not happen.  Just remember that in this case, no news should mean good news!

Two Weeks of NG-Tube, Seemingly No Closer to G-Tube Placement

Wow - two weeks of insanity, my new lifestyle with a medically complicated child.  

She is asking her hand what she should think about mommy feeding her with a syringe....this was very time consuming so
I requested that we go home with a pump, and that is exactly what we did!

I've heard a few of my readers don't like my long posts, but I know that others like the details. So here's the Cliff Notes version:

- NG-Tube trial a success
- Christy needs tonsils out at first surgery to avoid problems coming out of anesthesia due to her obstructive sleep apnea
- Christy needs medical home to be Neurodevelopmental Clinic at Children's Hospital.
- She will be assessed there in two weeks, as well as getting another swallow study and meeting with a nutritionist
- Best case scenario is tonsils, adenoids and G-Tube surgeries all together and hopefully in early November.

Scroll down for lots of photo and all the details for you detail loving readers!

Good morning! It took a long time for her to get to sleep after being rudely awakened after just falling asleep right after pulling her tube out...then having that mean mommy put it back.  It took hours of mommy rocking and singing to settle her down.  So glad she has a mommy now when she is so very, very sad!

Mommy invented a new way to secure the NG-Tube - make it a part of the hairdo!

Oh SOOO happy to see Daddy!

Mommy!  Look, Daddy's Here!

So, back to my opening statement....Yep - that is what they refer to Christy as..."Medically Complicated"!  This is much better than medically fragile - that is what Esther was until after her heart surgery at 3 months of age.

But that didn't stop us.  No indeed.  What did we do the day after getting out of the hospital?  We took everybody (that still lives at home) to the Pumpkin Pitch in Burlington!  Even Jessica's fiance came along!

Sweet Jon - swept Esther off her feet and carried her out into the field to help her find candy!
 Jessica has got herself a winner with this guy!

The crew - our youngest 10 children plus Jon!  We make a crowd all by ourselves!

Christy seemed to be very happy to be out and about that day,
as long as we kept her out of the wind!

Oh the Joy of grass, fresh air and freedom!

Esther loved being out and about too!

But back to Christy being Medically Complicated!  Overall, Christy is quite healthy - she has not suffered from even a cold since we came home in spite of our family having three colds and two stomach viruses since she came home.  It seems she has a great immune system in place, and that is good!

By feeding her thick foods all summer, I was able to avoid causing her to aspirate and that kept her healthy.  But that was at a cost of low level dehydration.  Thankfully this did not compromise her health.  But if we had continued this routine, it could have.  So now we are giving her fluids and extra calories through her NG Tube and it is working beautifully so far!

Carese enjoyed this sucker
for a long time!

 In the past 2 weeks she has gained over 2 1/2 pounds!  She is sleeping a little better and the dark circles under her eyes are much lighter now.  She take shorter naps too.  She still suffers from reflux, but it is better than it was when I was pushing thickened liquids via mouth.  She is also now running 99 - 100% on her oxygen levels, whereas when I was pushing thickened liquids via mouth, she was running between 92-95%.  This proves that even with thicker than pudding level thickened liquids she was still aspirating at possibly every meal.  And she was loosing weight and tiring easily.

So she has passed all the requirements with the NG-Tube that show that she will benefit from having a G-Tube placed.  But we can't schedule it yet.

Christy No Like EEG!  She almost got her
NG Tube out with all her wiggling around!

At Seattle Children's they have a new protocol - a child need a medical home (a doctor/clinic) who will take the responsibility of ordering the surgery and for follow up care.  Originally they had assigned her to pulmonary, but since her O2 stats improved so well in response to discontinuing her fluids by mouth, they no longer felt that that was the best place.

Everyone enjoyed the Buddy Walk again this year!

On Thursday after many phone calls and no one being able to get in touch with the surgeon for answers, the nurse suggested that we come to clinic tomorrow and get to talk with him face to face.  So we scheduled that and I also requested that we get an appointment for Christy in the PASS clinic.  This is a pre-surgery appointment where you meet with the anesthesia staff and they evaluate your child to see if they are in good shape for surgery and to address any concerns that anyone (parent or medical staff) might have concerning having the child sedated for surgery.  I am so glad we did this last Friday (didn't plan to go down there again until Thursday, but it was needed in order to confer further with a hard to get a hold of surgeon, and to prove that Christy was indeed doing so well on the NG-Tube)!  The anesthesia team is very concerned about her Obstructive Sleep Apnea (OSA), and that is they only place the G-Tube in her first surgery, her tonsils/OSA may make is very hard on her in recovery, maybe even cause a crisis.  So they wanted to recommend having her tonsils/adenoids  (T/A) out first, or at least having both procedures done at the same time.  So she said that she would talk things over with the surgeon and ENT doctor and get back with me early this week.

Christy with her NG Hairdo and her knew Hello Kitty G-Tube enhanced back pack!!
Being out and about with an NG-Tube - no problem, just have to plan ahead!

Earlier that day when I met with the surgeon, he said that he really would like to see Christy have a swallow study done at Children's and that in all likelihood, they would be switching Christy to Neurodevelopmental (ND) for her medical home, which might require them to see her in clinic before they would do that.  Bummer!  Another trip to Seattle.

A photos is worth a thousand words....these two are becoming fast friends
and Esther likes to comfort Christy when she needs it!

Having an NG Tube does not mean she doesn't eat!
She still enjoys eating three meals a day!

On Monday I got a call from the ND clinic and it was even a doctor! Dr Lisa called to see what I understood as to what was going on with Christy and with Children's and why she needed to be seen there.  She also agreed that a swallow study needed to be done.  She also wanted us to see a nutritionist to go over her nutrition now that we've had the NG-Tube for a while.  But she also said that they were scheduling into December, but that she would work to get us into the schedule in the next few weeks.  Within a few hours, I got a call back that she could be seen for all three appointments in two weeks.

As of a few minutes ago, she is now scheduled for her T/A 2 weeks from Monday.  If they decide it's best for her to just have her T/A done first all by itself, then it's all set up.  If they want to combine the T/A and G-Tube we'll cancel that and schedule both together at a later date.  If she has the T/A first she will most like not have the G-Tube place until December...not my first choice that is for sure!

So, here we are, doing the NG-Tube thing for an undisclosed amount of time.  I'm guessing that if all goes well, she'll be getting her T/A + G-Tube surgeries at the same time and it will be sometime in November.

chicken alfredo with spinach....
nasty looking but she liked it!

thickened peaches on the left,
thickened chicken alfredo on right

Time will tell.  At this point, we have figured out how to prevent Christy from pulling out the NG-Tube, but it was been a huge learning curve.  My experience with Esther having an NG-Tube was limited to a newborn who had very little control over her limbs.  Christy has lots of control over most of her limbs.

The first 5 days home after the NG-Tube placement,  I had to put the NG-Tube back in 4 times.  Not bad, and each time it was a little less traumatic for Christy, but I am so glad it's going so much better now.

She now noticed by sight when I switch
foods and wants to decide if she
will like it or not!

She does not like peaches
and she prefers not to eat pears!

We keep an arm brace on her left arm most of the time.  She does not seem to mind this and is thrilled when we take it off.  This has also led to her using her right arm more and that is a good thing!  She has also successfully pulled the feeding tube out with her toes, so now she wears tights of footed pajamas all the time (she pulls socks off in seconds!).  We also have to keep her arm brace under a long sleeved shirt as she will pull the velcro strap off with her teeth and shake the brace off in no time!  So after learning these lessons, she has not been able to pull it out since last Thursday morning.  So it is getting easier.

Monday I took the youngest nine children to the grand opening of an ice cream parlor
and we all enjoyed some great ice cream and just going somewhere just for the fun of it!
  It also was great motivation for getting the Monday morning chores done!

So I have two weeks of normalcy - only appointments for therapy one day a week!  I so need this.  At first I was frustrated and bummed for the seeming delay for the next step, but since then I have seen that I need some time to just be home.  I'm worn out and tired and stressed and all that leads to being further worn out/tired/stressed.  So I'm going to make the most of this time and do a few things at home that I have been unable to do since the beginning of September - get caught up on things like laundry, getting school underway for my kids, doing therapy/preschool with Esther and just being there for my two year old who needs her mama!  Of course that will all be happening between feeding Christy 3 healthy meals per day by mouth, and three tube feeds via her NG-Tube and feeding pump.

NG Tube Trial - Admitted to Seattle Children's Hospital

Christy playing, Mommy doing paperwork
at General Surgery Clinic

So, once again, our week is nothing like we planned.  Started out with just two days of appointments, but the trip to Children's Hospital in Seattle yesterday was going to be two appointments, and then they scheduled an Upper GI for this morning in order to move forward towards having a G-Tube Placed.  So we were blessed with friends whom I only knew online (real life friends of my real life friend, Renee of Little Earthling Photography) who were willing to take us in spontaneously (we didn't even know we needed accomodations until after 5 pm!).

Christy hanging out with her/
oldest sister, Jessica!

So after crashing at their place (we had a lot common - Grace is expecting her 9th, and has adopted a little boy from Ukraine a few years back who has Down Syndrome).  We got up super early to try to beat the traffic and headed in.  In my sleep deprived state, I headed to Bellevue Children's (had been there twice within a week's time!).  But we were still early, so going to the Seattle campus still worked out fine.

Catch me if you can!

Her Upper GI series exrays showed that she has no physical anomalies that would prevent having a G-Tube Place, yay!  After consulting with the pumonologist, we were able to get a bed and she has be admitted and received her NG Tube and we will be here 24 - 48 hours until I understand how they want me to feed her and how that works with how I think she should be fed (i.e. negotiations are in progress!).

My silly, goofy, lovable girly!

She LOVES to eat!

She has been a great little traveler and took most every in stride....but getting the NG-Tube placed had her more upset than I have ever seen her, and I was her tormentor.  It's so hard!    She was able to pull it halfway out, so now she has a hand-mitt on so she can't snag the tube with her good hand.

Wow!  Cool Crib!

Finally happy again after NG Tube was put in/'by
 her big bad mama....but she's forgiven me already!

I am hoping that we will be able to be discharged tomorrow since I already have experience with the NG-Tube from Esther's first 4 1/2 months!

How tangled can I get?
Very Tangled!

I'll update if anything changes, but I'm hoping the next blogpost will be next week and from home!  I'm hoping to travel to my mother's house this weekend to introduce Christy to her grandma!

Prayers appreciated for good progress and an early release and that all goes well at home in my absence!

Christy's 4 month update - Tonsils, Sleeping and Tubes, OH MY!

Fresh Air = Sleepy Girl!

Camping = Double Stroller Time!

You may or may not have noticed that I did not do a "Three Months Home" blog post about Christy, but I did.  I really wanted to do that, but I just didn't have the time, and our camera had gone missing so I couldn't post photos!

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!)

Right after my last "Christy Update" I took Christy in for a weight check.  After her feeding evaluation in July, I realized that she was not gaining weight so on the therapists recommendation I began adding Pediasure to her diet.  After two weeks of doing this I had her weight checked and she had gained 11 oz since she had come home.  So that was working.

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!

Well, it became apparent at camp that Christy was waking many more times than I had been aware, but she would usually comfort herself back to sleep.  But every morning at 4 am sharp, she would wake completely up and start making a lot of noise, between rocking her crib (which would rock the whole trailer) and happy noises as she would see that mommy was right next to her crib.  I would have to work to keep her quiet until she went back to sleep, which usually took 1 1/2 to 2 hours.  Needless to say, I was not getting much sleep at camp, so much so that I had to bail and go home with the girls Saturday so I could get some sleep and not have a complete meltdown at camp!

Christy doing table time, playing with blocks,
as part of her daily therapy/play time at home.

In August Christy and Esther both saw the ENT, Dr Englais (sp?), at Seattle Children's Hospital.  We discussed her snoring and sleep problems.  Esther got exrays to check on her adenoids/possible regrowth but she is all clear!  Christy, however, needs her tonsils out for sure, and the doctor said he was sure she needed her adenoids removed too, but didn't want to exray her for that and just make the final decision during surgery.  We also discussed having this done when she gets her dental work done (did I mention that she needs sedated dental work done due to some cavities?).  She will also get an MRI done when sedated so we have a better idea of the brain damage that resulted in her having Cerebral Palsy or a stroke (we are not sure which she has since we don't know when the brain damage occurred).

She does like to explore her world using her mouth!

The last week of August was our first Post Adoption Report home visit.  We had a social worker from our home study agency come to our home to see how Christy was doing and how well we are caring for her as well as how she is doing in our family!  We got the report back and it was like a pat on the back - she spoke of our family and Christy in glowing terms.  Boy that sure meant a lot to me.  This report should be back from getting apostilled any day now and then I will send it to our adoption agency and they will forward it to the Bulgarian authorities.  These Post Adoption Reports help countries like Bulgaria to determine if it is in the best interest of the children for them to be adopted into families in the U.S. so these reports are vital to the ongoing adoptions for other orphans!

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!

Just to see how the dietary changes were working, I had her in for a weight check the day before the home visit and we found that she had gained about a pound since her weight check 4 weeks before - that was great news!

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

So, we have been working to get her the proper liquids by giving her apple juice thickened with Thick It to just past pudding thickness.  We were weighing her diapers to see how well she is extracting liquid from her foods/thickened liquids for proper hydration.  If I gave her 1/3 cup of thickened apple juice at each meal, she had more than sufficient output.  But, she has also been struggling to gain weight, so it's a balancing act at getting enough calories into her so adding more fluids (bulk with fewer calories) meant a possible trade off...being hydrated but not gaining weight.  So for two weeks I've been working at this, and it's a struggle and when my life got SUPER busy last week and this week, it was nearly impossible to ensure that she was betting proper nutrition and proper hydration, and as of yesterday the scale said that she had actually lost weight (around 1/2 pound in 2 weeks) when we started adding more fluids....and her reflux has gotten worse too.

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!

Yesterday I met with a nutritionist and we had a long talk about Christy's nutritional struggles.  She watched me feed her lunch while we talked about all of that.  She also recommended placing a G-Tube and we talked at length about the pros and cons of a G-Tube and so much of what she said now makes even more sense, especially after seeing how hard it is to get her properly hydrated when our days are busy.  Yes, the last two weeks were busier than usual, but even taking that into account, it is very time consuming to get enough nutrition into her, and she tires before we are done feeding her and she is refluxing more now due to the greater volume in her stomach at meals.  The nutritionist recommends moving to 6 smaller meals - great idea, but implementing that will be even that much harder for this busy mom. With a G-Tube she can get her in between meals food/liquids via her tube, and just feel her main meals by mouth, and give her fluids at meals through the tube.  It's beginning to sound like the best way to me now.

My beautiful Bulgarian Princess!

I was getting head of thing there...the appointment with the nutritionist was yesterday on our way home from the sleep study and her sleep study set up appointment was on Monday!

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!

Fast Forward to yesterday!  We left early for the trip to Bellevue (about 1 1/2 hour drive in perfect traffic), around 3 pm, so I could have dinner with a friend/adoptive mom before the check in time of 7 pm.  We checked in after I got lots of exercise finding the clinic (left the instruction in the car and there was only one sign that I did not read completely as I thought there would be more signs on where to go).  They wanted me to bring her in to discuss the results a couple of weeks after the sleep study, but  was able to turn that into a phone call scheduled since we live so far away, phew!  If there was anything that caused concern, they would call us in two days to discuss that - so far, no phone calls!

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...

Once I was done and she was ready, the wiring began!  They stuck things to her head for the EEG and then wrapped her head like a war wound victim and then a kind of stocking thing over all of that.  Then she put on waste bands to measure her work of breathing, monitors to her legs to check for restless leg movements and the PulseOx to her toe.  Lastly they attached a nasal canula that had things attached to monitor her breathing through her nose and mouth - this did not go over well with Christy at all!   After everything was attached, the gazillion wires were held together like a big pony tail down her back.

What does the hand say about the nasal canula?  NO!

Overall, Christy took it all in stride.  But her method or rocking herself to sleep, and moving in many different positions as she does this made things difficult.  As she would get close to sleep, some electrode or another would come off.  They also ended up with the PulsOx on three extremities trying to get a better reading, but 95% seemed to just be her best reading.  After 1 1/2 hours, she finally fell asleep...with that "hat" pretty much off her head.  Around 1 am she started into her waking/rocking herself to sleep pattern.  At one point they nurses had to come in and try to put the stuff on her head back on.  It lasted a little while.  At some point they added two additional waist band monitors too.

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!

We made a hasty get away, and I headed north - stopping to do the family shopping halfway home (she had taken a short nap on that portion of the journey).  Christy also had a physical therapy session late in the morning.  There we discussed acquiring braces/DAFOs for Christy to get her set up for weight bearing/gate training/walking practice.  Then I met Daryl for lunch (had only seen him for 10 minutes since Sunday night!), and then Christy and I were off to the nutritionist appointment.

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.