I’ve been too busy to write, and am now faced with figuring out how to relate all that has been happening without keeping you here ’til Christmas. Tolstoy I am not, but you may think I’m his niece if you read this whole update in one sitting!
I’ll start with what I am sure Abbie would say is the most important:
PART I: ABBIE’S EIGHTH BIRTHDAY:
Her day, August 23rd, did not slip by unnoticed, especially by her. She wore a shirt proclaiming “Birthday Girl” to church, but we left the tiara at home because it pinched her head. I told her that was because she’s getting so smart. Our pool is undergoing some renovation, so we decided to wait to have the official party until that project is complete. The pool is Abbie’s “Happy Place”, ironically enough, so she wants to have her friends over for a pool party.
After church we took her down to the Pacific Club so she could swim with her Daddy. I thought her face would freeze with that dimple in place (not that I would mind one bit), because she never stopped smiling. We enjoyed a nice dinner, and them came home to savor the wonderful birthday cake that Auntie Rae had made. Perfect for Abbie with lots of whipped cream and chocolate pudding, it wasn’t a hard sell to her brothers either!
She is so very proud to be eight! We’ve used this to our advantage in therapy recently. Lisa, her speech therapist, had her “build” a birthday cake by making her pick out the pieces in the right order. She then sent it home for us to decorate.
Well, Abbie has been blossoming so much in her reading lately (more on that later), that we decided she could “write” on her cake, instead of just putting stickers on it. So the cake you see below, every it of it, was built through Abbie’s hard work. You see, not only did she have to identify the right color and size for the layers, but she had to correctly identify every single letter on that cake. We would give her a choice between two letters, and she never missed…not once! This is one birthday cake that is going to be framed and hung on the wall!
PART II: Scary Times and Sirens
Last Sunday, Kapiolani was having a huge event at the zoo to celebrate 100 years of caring for children and women. After church we quickly changed Abbie, slathered her in sunscreen and got her in the stroller, ready to go. Moments later, as we were set to walk out the door, I noticed that her lips were purple.
“That’s odd,” I thought. So, I checked her with the pulse-ox. It showed 81. “No way!” So, I grabbed our back-up fingertip pulse-ox to check — it said 79.
We quickly got her onto the massage table and watched her cheeks and eyes puff up and turn purple, and her trunk and arms get splotchy. She was really struggling to breath, and even 4 liters of oxygen wasn’t helping her. As it became obvious she was having an allergic reaction to the sunscreen, I ran and got some Benadryl (thank goodness for G-tubes!)
After 10 minutes we still couldn’t stabilize her breathing, so I had to call 911. Pretty surreal, as we have never had to do that in all these years since Abbie’s injury.
The firefighters arrived first and put her on 15 liters with a non-rebreathing mask. This at least got her sats to 90, but she was still taking over 60 breaths a minute, and each one was a struggle. Once the paramedics arrived, we decided to go the ER, because I could not support that level of oxygen need at home.
At the ER they gave her an injection of epinephrine and a breathing treatment, after which she was very vocal. As we waited and watched, the doc said he was still deciding whether to give her an IV. Abbie was looking away as he said this, but the second she heard “IV” she turned to look straight at him, as if to say, “I don’t think so.”
We were able to come home after a few hours because we have oxygen and a nebulizer at home. I was thankful, and sure that all the drama was over. Turns out I was wrong. It’s now five days later and we are still dealing with flare-ups. Just this morning her sats went into the 70s, and I had to put her on 5 liters of air, give a nebulizer and Benadryl, and try every trick I know to get her to breath and cough.
I am always so careful about what goes into and onto her body. Sunday was a total lapse in judgement, in the rush to get to the zoo. I simply grabbed a “Baby” sunscreen we had in the house, because it said “hypoallergenic”, and I thought that if it was safe for a baby’s skin, it would be OK for Abbie. Dumb, dumb, dumb.
So, all I can say is DO NOT USE Banana Boat Baby Tear Free Sunscreen SPF 50, and toss it out if you have some. After Abbie’s severe reaction, I researched all the ingredients and was completely amazed that this concoction can be labeled safe for babies.
PART III: Smarty-Pants
We are blessed with some very exceptional nurses. After hanging out with Abbie for a while, they seem to morph into nurse/therapist/teachers. One of them in particular, Rae, is always thinking about how to open new doors for Abbie academically, and coming up with new ideas to try. Lately, she has been focusing on Abbie’s reading, and over the past two weeks we have both been taken by surprise at Abbie’s response.
Because Abbie is getting more movement in her arms, she is now able to move her hand between two choices on a little lapdesk, which allows her much more freedom of expression, and quicker choice making, than just using her one little hand-held switch.
One Saturday Rae confirmed that Abbie knows all the color, shape, and number words, as well as many of her reading vocabulary words. Still amazed a week later, she wanted to find some way to show that Abbie was actually reading and not guessing. So, she wrote the word “rainbow” on a card and showed it to her a few times. She also made cards with a picture of a rainbow on one and a flower on the other.
She then showed Abbie the word “rainbow” without telling her what it was, and said, “This is what you are looking for.” Then, she showed her the two pictures and said, “This one will be on your left, and this one will be on your right.”
Abbie was able to use her arm to find the rainbow picture. So, in one activity she had accomplished many things: reading “rainbow”, connecting it mentally to the picture, knowing “right” and “left”, remembering which side the rainbow picture was placed on, and then moving her body to find it.
Rae and I were jumping for joy – literally, I am glad there is not a video. It is just so glaringly obvious that there is great intellect inside that little body that is beginning to cooperate! My thought that evening was, “This little girl is going to grow up and go to college!”
When I shared that “crazy” thought with her speech therapist, Lisa, a few days later, she looked straight at me and said, “Well, of course she is. She’s not going to let you hold her back, you know!”
PART IV: School
We have been doing many wonderful things in our homeschooling, as you have just read. But, we are beginning the IEP again to see if we can find a safe, appropriate place for Abbie to attend school part-time. She very much wants to go, but we have to make sure that everything is in place to support her medically, physically, academically, socially and emotionally.
Since this process is going to take time, we are going to keep pushing ahead with homeschooling, adding some new things we just found out about. One is “Precision Academics”, which Abbie’s neurodevelopmentalist showed us yesterday. This program is all online, and the workbooks are easily adaptable for what Abbie needs. I am very excited to have a little more academic structure, and can’t wait to see what Abbie will surprise us with next.
PART V: Assignment: Dance
As I mentioned, we saw Abbie’s neurodevelopmentalist, Linda Kane, for the first time in 18 months yesterday. During the drive out there, I was psyching myself up to find a way to do the exercises with Abbie that Linda would be assigning us. Many of them take four people to do, and are difficult for Abbie to physically accomplish. But, if we were going to commit the time and money to “doing program” again, we were going to do all of it faithfully….somehow.
Well, God heard my prayer of desperation before I even recognized I was praying one. In the interim since we last saw Linda, she has learned a new modality of therapy for children with high spasticity, like Abbie. It turns out that rather than the aggressive and difficult exercises, these kids respond beautifully to “Rhythmic Movement”, which is just gentle, rhythmic rocking motions on various parts of the body.
As Linda showed me “Movement 1″, which is just laying Abbie on her back, holding her ankles, and rocking her legs up toward her trunk, I thought, “Hey…THIS, I can do” All by myself, where ever we find ourselves during the day, I can do this!
The rest of the movements were just as simple, and, even better, enjoyable for Abbie. As she lay on her tummy, and I gently rocked her hips, she just melted. Linda told me we need to spend as much time each day doing this. I almost laughed, and told Abbie, “Our job now is to dance together all day….can you believe it???”
Ray and I were talking late in the evening, and the enormity of this appointment was finally sinking in. For almost five years I’ve carried a daily burden about what we need to be doing with Abbie’s body, about how much we are not doing, and how to figure out a way to make it happen. I didn’t realize how heavy that burden was until it was lifted, and replaced with an invitation to dance.
Linda also got to watch Abbie learn a new reading word, “Thursday”, in about 30 seconds. So, our new goal is for Abbie to read and communicate in sentences. This goal dovetails nicely with the progress in speech therapy, which is leading to new communication devices and strategies. Again, I say, “This girl is going to college!”
PART VI: Where the Rest of Summer Went
During this lapse in posting, we took a family vacation to the Cascade mountains in Washington state. As usual, Abbie traveled very well, and the new wheelchair was as much of a blessing as we thought it would be. The day we were to fly dawned with Kyle still in the hospital, being treated for complications of mono. He was released an hour before we left for the airport.
So, our normal parade through the airport was enhanced this time by having two wheelchairs instead of one…it was quite grand! Kyle spent the first few days of vacation in bed, after which he could finally eat and drink again. After that he made up for lost time, and we became concerned that he might accidentally eat one of his hands in the rush to stuff as much food into his mouth as quickly as humanly possible! He continues to recover, and unfortunately was not cleared to play water polo this fall. We are happy enough, though, that he was healthy enough to start school on Aug. 11 and has not missed a day yet.
Now we’re full-swing in the school year hub-bub: RJ’s football, Matt’s cross-country, band instruments, homework and looking forward to taking Chase to college in a couple weeks.
Most of all, I am finding that each day is bursting at the seams with joy! Abbie awakes every morning with smiles, and those early hours with her are the sweetest part of my day. Please pray for her health, though, as these flare-ups from the allergic reaction are very challenging, happen quickly, and are limiting for her.
God is good!