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Friday, September 12, 2014

No news is good news

I haven't updated in a while but it's because I didn't want to jinx anything. Raya has been feeling really good for about the last 10 days. When she feels good, it carries into every aspect of her life and everything is just better for her and easier for her (and for all of us).

Last Tuesday's therapy appointment went much better than the previous week's appointment. (the one where she puked because she was having major anxiety over knowing we were about to go in for a blood draw) She was a little reluctant and insisted on bringing her blanket and holding it while she did her therapy program, but she was cooperative and in a pretty good mood.
(her therapist asked her a question & she was trying to think of an answer)

Wednesday (9-3) was a pretty amazing day, and was the day that she really turned a corner. She went to school in underwear for the first time ever, and went the entire day from 8am to 7pm with no accidents. It was the first time she had ever worn them all day, and the first time she'd ever left the house for that long without a pull-up on. Potty training has been very difficult and slow going for her because of the digestive issues she has, but she had...um...emptied her bowels first thing in the morning and only ever goes once a day so I decided to throw caution to the wind and it worked out great. Not only did she wear undies all day, but she also ate food 3 times that day. She hadn't really been eating at all since she got the GJ tube in July, so it was exciting to hear her ask for food again.

Thursday (9-4) was our visit with the sleep specialist. Raya had a lovely time playing with a little boy she met in the waiting room who shared his cars with her.

 It was not as helpful as I had hoped and was a bit disappointing, but the good news was that she handled the appointment really well. She didn't hide in the stroller like she often does (probably because I made her walk since she was feeling good that day, so Piper was in the stroller) and she was chatty and friendly to the doctor. She also made it difficult for him to understand how she was ever diagnosed with cerebral palsy, which he commented on more than once, but thankfully I was in a good frame of mind and found those comments to be mildly annoying instead of sending me into a defensive panic like usual. The gist of that appointment is that while pharmaceuticals can make just about anybody fall asleep, they can't make them stay asleep. She has problems with both of those things, so pretty much what he was saying is that we're lucky the meds we're using work for getting her to go to sleep but there's nothing he can do to make her stay asleep. He also said that a sleep study would not give us any insight into why she can't fall asleep or stay asleep, unless there is apnea involved. Because she sometimes snores, we are going to do a sleep study anyway. Eventually. If they ever call me to schedule it. I was glad that I had talked to some other moms about this doctor before we went there because his personality and style can be a little hard to take. Knowing what I was walking into before I went in made it MUCH easier for me to keep up with the flow of the appointment and be able to swallow what he was saying and not take anything personally. One thing that he said that I greatly appreciated was that he could see that we were really up against a wall when we decided to start Raya on sleep meds, and that he absolutely did not judge us for that decision. It's always good to hear things like that from a doctor.

Friday was another great day. She didn't wear a pull-up to school that day and did great with using the potty all day long. In the past week, she has eaten dinner with us, meaning the same food we're eating, 4 or 5 times. It kind of came out of nowhere but it's been great to have her feeling good and doing so well. I should clarify that when I say she ate dinner with us, I mean that she took small nibbles of whatever food we were having for dinner and swallowed most of what she put in her mouth. It probably totaled about a tablespoon each time, but that's a tablespoon more than what she's been having!


One night, we ate sweet Italian turkey sausage, cooked and sliced, with zucchini and mushrooms. We also had pasta so Raya had some of her quinoa pasta, and some pasta sauce that is okay for her. She asked for food but I admit that I didn't really expect that she would eat it. I know that sounds cynical but for my own mental and emotional health, I have to find a balance between hope and reality, and a large part of that is accepting that she doesn't eat. On that night though, she was ready for food. I cringed a bit when she kept eating more food because I was afraid it would come back to haunt her (and me) later that night but she was fine! She was absolutely delightful during dinner too. It was a running commentary peppered with movie quotes and belly laughter.

The next night, she ate pork loin (it was the most tender, juicy pork loin ever, if I don't say so myself) along with a few black beans, some corn, and a few pieces of raw onion. Yep, girlfriend ate raw onion and then even though she told me it hurt her mouth & throat, she picked up another chunk and ate it too. Equally as important as the fact that she ate was that she was happy while she ate, and seemed to really enjoy dinnertime with us. She likes eating the same food everybody else is eating, so I try to make things as Raya-friendly as possible, or at least have part of the meal that she can have.



This week has gone about as well as it possibly could have, considering how busy it has been. Monday was a wild day in Phoenix. This area got about half of the annual rainfall averages in 6-8 hours on Monday morning. I woke up at 2:00 and it was pouring outside, which is not unusual for this time of year. What WAS unusual was that when I got up 4 hours later, it was STILL pouring, and the standing water was rising everywhere. We are lucky that our area has been planned well and all of the retention basins and drainage systems did their jobs, but a lot of parts of the valley were not so lucky and had flooding that caused a lot of damage. All of the parks in our neighborhood filled up with water and looked like lakes. As a result, it's been hot & muggy all week but sometimes even that is a nice break from the usual dry heat.

Tuesday, Raya had OT but her feeding therapist was still out of town. There was still standing water everywhere so driving on certain roads was a pain. Later that night, we had the viewing for Raya's 102 year old great-grandfather, who passed away last Wednesday. It had been almost exactly 3 years since his sweet wife had passed away, and although we miss them both, it was sweet to think of them being reunited. They were married for 64 years when she passed away. The day of her viewing, Raya was going through withdrawals from a medication she had discontinued. It was a stark contrast to how good she felt the night of Grandpa's viewing, and we were grateful!

Wednesday was a LOOOOONG day but also a really good day. There was a viewing at 9 and the funeral was at 10, so we got there shortly after 9. (The amount of stuff we had to pack for the 2 youngest to leave the house for the day was rather ridiculous.) The funeral was about as nice as a funeral can possibly be. Grandpa & Grandma had 5 daughters, 30 grandchildren, and 83 (and counting) great-grandchildren. Including spouses (i.e. me & all the other in-laws) there are 160 people in my mother-in-law's family. Pretty incredible! Grandma was 92 when she passed away 3 years ago, and Grandpa turned 102 in April. This is one of my favorite pictures from his birthday party:


Although there were quite a few spouses and great-grandchildren missing from the funeral, there was only 1 of Donny's cousins that wasn't able to be there. It was a beautiful thing to see so many of Grandpa's family members gathered to celebrate his life. It was the largest family gathering we've had, and probably the largest one that will ever happen. It is always sad to see a loved one pass away, even if they have lived for 102 years. The loss of the family patriarch changes things, and it's sad knowing that the family won't ever be the same without him.

The funeral service was a beautiful tribute to him. Each of his daughters shared a portion of his life story. I think one of the favorite moments was when one of the aunts played a recording of Grandpa telling a story about his childhood. The faces of all of his grandchildren lit up when his voice filled the room. He was quite the storyteller. Another favorite moment was when all of the grandchildren & their spouses, and all of the great-grandchildren got up to sing his favorite song, "I Am a Child of God". Grandpa would have loved it! One of the sweetest memories I have of Grandpa was the morning that my sister passed away. She was in a car accident in the pre-dawn hours on a Sunday morning. It happened to be the same day that my niece was being blessed, so there was a family gathering at my in-laws' house after the baby blessing. Donny and I had not made it to the blessing after getting the news of my sister's death, so we met them at the house later. I don't remember what Grandpa said to me, but he gave me a hug and handed me a $50 bill. It was a kind gesture at a time when nobody really knew what to say or do, and I really appreciated it. I've joked that I'm pretty sure he never knew my name. He always just called me "Red" or "Ol' Red" and I loved it. :)

When the funeral service was over, we all got in our cars and drove 25 miles to the cemetery where they had bought burial plots back in 1951. They were planners. :) This was the first funeral I had ever been to where there were military honors, and it really added to the experience. It was a hot, muggy day and Raya was feeling it. Poor kid was soaked with sweat and pretty exhausted. She's also been really sensitive to light lately so she insisted on wearing her Hello Kitty sunglasses. I thought she looked adorable. :)



After the graveside service, we all went back to the church for a late lunch that was provided by Grandpa & Grandma's ward members. On the way back to the church, she let out a big sigh and said, "Why do we have to keep going all these places?! Can't we just go HOME?" Everybody was pretty worn out by then. She changed her tune when we got back to the church though. It happened that most of the food was okay for Raya to eat, so she shared a plate with me and was really excited about it. 
We had tostada shells with ground beef, beans, and salsa. Her favorite thing was the salsa. After I had finished eating, she ended up sitting down next to Donny's cousin & his wife and chatted them up while eating salsa with a spoon.

After everyone was finished eating, Raya helped stack the chairs. I guess she was craving some sensory input in the form of heavy work by then because that was one of her favorite activities of the day.

 When things were all cleaned up, we said our goodbyes to the out-of-town cousins and headed home. For a couple hours. Then we all loaded up and went to our oldest nephew's JV football game. It blows my mind that he's old enough to be a sophomore in high school but it was really fun watching him play. Most of the kids enjoyed the game too. Kaida was a little bored and asked at the end of the 1st quarter if it was almost over, but other than that it went well. The weather had cooled a bit by then too and it was a nice evening for football. Raya was zapped by then and I think any other kid would have been passed out before the game was over. She would have if her mind & body would let her!
It was after 10pm when we got home, and all the kids were in desperate need of showers. They were all in bed around 10:30, which is pretty late for kids who usually go to bed between 7 and 7:30. Everybody was exhausted the next morning and I was glad Raya didn't have to go to school. Piper slept most of the day with occasional food breaks, and everybody went to bed early Thursday night.

OOH, and speaking of sleep, that has been another huge development in the past week. Raya has slept through the night for several nights in a row. She hasn't even gotten out of bed to bring me her beeping pump in the middle of the night! It has been awesome for her and for me. (well, except that I'm still pumping & bottle feeding breastmilk for Piper so I'm still up, but it's a huge improvement!)


I wish I could pinpoint something we did that caused her to turn this corner but I really don't know. She got over the cold she'd had for the couple of weeks before, and I know that helped. My only other theory is that the J portion of her GJ tube has settled into a comfortable position in her intestine and she's finally feeling good. Feeling good leads to better sleep, which leads to a happier, more cooperative, more focused child, and feeling good also leads to eating. I cringe every time I flush her J port because it is still very sluggish and even flushing with "magic water" (i.e. seltzer water) doesn't completely clear it, but I am hoping & praying that it will hold out as long as possible so that we can keep her feeling good.






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