Now seems as good a time as any to post about this past week. Now as I sit here holding my crying Aimee. There isn't much I can do to help her feel better, for one because I have no idea what is wrong. Some nights she just cries. It breaks my heart when the giant tears roll down her face. I just hold her, sing to her, and wait for the sadness to pass.
We had an unusual bout of events this week at home. It started on Tuesday night when I was carefully moving Aimee out of her chair to sit with me on the couch while she finished her dinner. To my great horror, the tube caught somewhere along the way and the button in her stomach popped out. What an awful moment as I realized what had happened. There I see the little balloon, which should be safe inside of her, dangling at the end of the feeding tube with blenderized food just dripping out steadily. Oh boy did I feel sick. Thankfully Ed was home with me and he very calmly cleaned up the button as I cleaned spilled food and blood off of Aimee. We were able to replace it fairly quickly.
After a nervous night of watching and listening for any problems, I woke Aimee up to find her abdomen covered with tiny raised dots. A rash on her stomach. The main concern I had was that it could be a side effect of one of her seizure medications. We were very specifically told that if we ever saw a rash on her stomach to immediately call neurology as it could be a dangerous syndrome developing. After talking with a nurse, we decided to take her in to the doctor for a check-in. It didn't seem to be spreading and after this appointment the doctors decided to have us just put her on Benadryl and watch her for 24 hours to be sure there was no negative changes. The rash seemed a bit better in the morning and now it is almost gone. Looking back on it, it seems that the rash had to be one of two things, a strangely timed eczema issue or rash caused by the shock of her button being pulled out.
The most frustrating part of this whole process was how high energy Aimee has been through it. Of course this is a good thing that she is happy and hyper, but the frustration is that we did not use the BiPAP machine during the last several nights, because she was on Benadryl. So somehow no machine and medication is more affective than the machine whose purpose is to help her get good sleep. Big, big sigh!
3.22.12
Enjoying Holland 3.20.12
One more thing to share. I just read this little blurb on another mother's blog and it really clicked for me and the experiences we go through with Aimee.
When
you’re going to have a baby, it’s like planning a fabulous vacation
trip to Italy. You buy a bunch of guide books and make your wonderful
plans. The Coliseum, the Sistine Chapel, Gondolas. You may learn some
handy phrases in Italian. It’s all very exciting. After several months
of eager anticipation, the day finally arrives. You pack your bags and
off you go.
Several
hours later, the plane lands. The stewardess comes in and says,
“Welcome to Holland!” “Holland?” you say. “What do you mean, Holland? I
signed up for Italy. I’m supposed to be in Italy. All my life I’ve
dreamed of going to Italy.” But there’s been a change in the flight
plan. They’ve landed in Holland and there you must stay.
The
important thing is that they haven’t taken you to a horrible,
disgusting, filthy place full of pestilence, famine, and disease. It’s
just a different place. So, you must go out and buy new guidebooks. And
you must learn a whole new language. And you will meet a whole new group
of people you would never have met. It’s just a different place.
It’s
slower paced than Italy, less flashy than Italy. But after you’ve been
there for a while and you catch your breath, you look around. You begin
to notice that Holland has windmills. Holland has tulips. And Holland
even has Rembrandts. But everyone you know is busy coming and going from
Italy, and they’re all bragging about what a wonderful time they had
there. And for the rest of your life you will say, “Yes, that’s where I
was supposed to go. That’s what I had planned.” And the pain of that
experience will never, ever, ever, go away. The loss of that dream is a
very significant loss.
But
if you spend your life mourning the fact that you didn’t get to Italy,
you may never be free to enjoy the very special, the very lovely things
about Holland.
3.20.12
Oh the ups and downs of therapy!
The last time I posted I was feeling really excited about the school therapists' ideas and the fact that they were finally on board with Aimee. Now here I sit on the other end of the excitement spectrum. Of the 4 types of in school therapy that Aimee is receiving, 3 of the therapists are working with her as a group. The first time that they came, I wasn't informed of the time they would be there. When I came to pick Aimee up from school, what I heard was a bit disturbing. They had tried to put her in a modified stander on her stomach, but she isn't strong enough to keep her neck extended, so she fell forward into the bar and was choking. She had a sad red mark on her throat to prove it too. :(
The second time I made sure that I was there with her. We came in to the school before class at the designated time, but they weren't at all ready for her. They spent over an hour trying to hook up equipment, replacing batteries, moving tables, ect. Aimee was so overwhelmed that she completely blocked them out. When they were finished setting up, they seemed surprised that she wouldn't wake up to work. Sigh. Maybe in school therapy won't be so effective after all.
The one neat thing that the school has provided is a button that attaches to the headrest of her chair. When she pushes the button by leaning her head to the right it activates a musical butterfly. The above video is of her excitedly playing with this toy.
Remember how we lost our funding through DDD to continue with her out of school therapy sessions? Well, we were able to have her evaluated and put through a referral from her Neurodevelopmental doctor to continue therapy sessions. So far, our insurance approved her for 7 OT visits to be completed by April 30th. On one hand this is great news, because we can continue working with Shaun, the therapist that Aimee has made real progress with this last couple years. The only little problem is that in this short of a period of time we need to show significant progress in order to have more sessions approved. :/ Aimee has definitely made huge progress this past year, but I'm not even sure the amount she has done in that time would be enough to satisfy them.
I took Aimee in for her 3 year well child check up with the Naturopath a couple weeks ago. We really love this doctor as he has seen Aimee since she was a small baby and has helped us through so many challenges. Aimee has grown by leaps and bounds this year (except for her head) and overall has been pretty healthy too. The only followup issue we came out of the appointment with was her lazy eye. Aimee has just started to track a few objects past midline in a very controlled environment, but when she does the right eye continues to follow the object for a moment and the left eye wanders back the other way. I am going to take her back down to the Ophthalmologist soon to discuss this with them. The danger if this continues to happen is that her vision will be blurry and her brain will actually shut off the wandering eye to preserve clarity. We certainly don't want Aimee to miss out on any more sensory input!
We have been having quite a bit of trouble getting Aimee adjusted to the new pressure and mask on the BiPap machine. Last night she only wore it for one hour. I finally took it off because the poor sweetie was just sobbing. Breaks my heart. We had such high hopes that it would increase her energy levels, helping her to be more awake during the day. So far it seems to have had the opposite result. I'm nervous that when I take her in for the follow up appointment with Pulmonary next month they will find an improvement in her blood carbon dioxide levels and insist that we continue using the machine despite the negative impacts that we see.
The last time I posted I was feeling really excited about the school therapists' ideas and the fact that they were finally on board with Aimee. Now here I sit on the other end of the excitement spectrum. Of the 4 types of in school therapy that Aimee is receiving, 3 of the therapists are working with her as a group. The first time that they came, I wasn't informed of the time they would be there. When I came to pick Aimee up from school, what I heard was a bit disturbing. They had tried to put her in a modified stander on her stomach, but she isn't strong enough to keep her neck extended, so she fell forward into the bar and was choking. She had a sad red mark on her throat to prove it too. :(
The second time I made sure that I was there with her. We came in to the school before class at the designated time, but they weren't at all ready for her. They spent over an hour trying to hook up equipment, replacing batteries, moving tables, ect. Aimee was so overwhelmed that she completely blocked them out. When they were finished setting up, they seemed surprised that she wouldn't wake up to work. Sigh. Maybe in school therapy won't be so effective after all.
The one neat thing that the school has provided is a button that attaches to the headrest of her chair. When she pushes the button by leaning her head to the right it activates a musical butterfly. The above video is of her excitedly playing with this toy.
 |
| Aimee and her cousin, Kenzie, playing in the balloon fort. |
 |
| Aimee and baby Caleb |
We have been having quite a bit of trouble getting Aimee adjusted to the new pressure and mask on the BiPap machine. Last night she only wore it for one hour. I finally took it off because the poor sweetie was just sobbing. Breaks my heart. We had such high hopes that it would increase her energy levels, helping her to be more awake during the day. So far it seems to have had the opposite result. I'm nervous that when I take her in for the follow up appointment with Pulmonary next month they will find an improvement in her blood carbon dioxide levels and insist that we continue using the machine despite the negative impacts that we see.
3.1.12
When turning 3 Aimee style, it is important to include
 |
| Birthday balloons |
 |
| Carousel rides |
 |
| Family photos |
 |
| Rainbow colored lollipops |
 |
| Trips to the zoo with grandparents |
 |
| and friends |
 |
| Tastes of chocolate pudding |
 |
| Balloon forts |
 |
| And lots of excitement! |
2.25.12
Tomorrow our little baby girl is turning 3 years old. 3. That is a big number. We decided this year, instead of hosting a birthday party to celebrate her life, we are going to do a few special things that she will enjoy. One of them will be taking her to the zoo tomorrow along with her Nana and Papa and a couple of close friends. I will post pictures in a few days of all the special things Aimee gets to do for her birthday.
One of the big challenges we had this last couple of weeks was working with the school district on setting up Aimee's IEP. After I last posted, Ed and I sat down and wrote out detailed emails to the school on why we needed them to work with us to provide Aimee with full one-on-one therapy with certified therapists in order for her to be academically successful. Shockingly, after a few exchanges and disagreements, it worked! Once we firmly declared our position and were able to back it up, it was almost like the therapists, teachers, ect suddenly respected us. Each one emailed me back a different response, but they all said how impressed they were with our advocacy and how right we were. Odd.
Last Friday, 7 different professionals came to our house (and 1 via skype) to write out goals and settle the final wording of her plan. It was amazing and so much better than I could have envisioned. In fact, the one therapist that was most intimidating at the last meeting, had jumped on board with our plan. She was so energetic and excited with the long term goals for Aimee. She has high hopes, things that I never pictured Aimee being able to do. She is such an experienced therapist that I am tempted to believe in the hopes too. One of them being that in several years, Aimee will be able to use a motorized wheelchair that is controlled by head motions. Of course, this will depend on so many things, yet, just knowing that there are possibilities like that available to her has gotten me excited again.
The main goal we set for her to reach by her 4th birthday, is to be able to use a switch (like her 'more' button) that is laid in front of her from a prone position (on her belly). The goal is for her to be able to be up on her elbows, lean over to one and extend the other hand to the switch. This is a HUGE GOAL. Somehow a year doesn't seem like enough time with all that would be involved in getting Aimee there, but she has really made big steps this past year in her desire and ability to hold her head up...
All that to say, in the last few weeks, my whole perspective has changed on the school working with Aimee. They are now totally on her side and rooting for her to progress. Totally amazed that we chose to be a bit confrontational and have seen such a big response.
We got the results from Aimee's second sleep study. They determined that with a 50% increase in the inhale pressure, as well as the backup pressure (the one that is triggered if she doesn't breath for a certain amount of time), that her sleep quality would improve. So this week home care came over a couple of times. They adjusted the pressures and brought over about 10 different masks to try out. The one we have been using fits her really perfectly, but causes skin breakdown on the bridge of her nose after just one full night of use. Hardly any of the masks fit her little nose or her nostrils, but there was one that might work. We used it for 4 hours last night and so far, no permanent damage. Hoping for positive changes this time around!
I took Aimee down to the Center for Pediatric Dentistry for her check-up. It was really, really not worth the drive. They brushed her teeth with a regular toothbrush and used a paint brush to put some fluoride one her. I had to ask questions to get them to tell me how her teeth were looking, ect. Really hoping to find a dentist closer to us that will see kids in a wheelchair.
Had to go into Audiology to get new ear molds made again! While there, it was decided that it is time to have another sedated BAER exam done to see if there have been any changes in her hearing over the past 1 1/2 years. We will take her in for that next month.
We had a check up with the GI department and mentioned that the site around her feeding button had been leaking a bit and seemed to be indenting her skin/stomach muscles around it. Since she first got the button in 2010 we hadn't changed the size, so they took it out and used a measuring device to see if the length into her stomach needed to be changed. It was a bit nerve wracking because they couldn't get the measuring device out of her when they were done. Telling me it had never happened before, didn't really make me feel better. They did finally manage to get it out and decided to up her button by 2 sizes (from 2 cm to 3 cm).
Neurodevelopmental gave us a referral to the Durable Medical Equipment department for a car seat evaluation. She is so tall that she is on the biggest settings for her current seat. We knew from the experiences of ordering her bath chair and her wheelchair that it would take several months to get a request through insurance, so we decided to pursue it before we needed it this time. :) Hoping our new, not so great, insurance company approves the request.
This Wednesday I met with the local Social Security office to determine if Aimee is eligible to receive Disability Benefits. Apparently, what they neglected to tell me during the 3 previous conversations, is that these benefits are a welfare program. Once she is 18, we can apply for her to receive them as an adult, but for now, she doesn't qualify due to our income being above poverty level. Would have been nice to know before pursuing it further.
One of the big challenges we had this last couple of weeks was working with the school district on setting up Aimee's IEP. After I last posted, Ed and I sat down and wrote out detailed emails to the school on why we needed them to work with us to provide Aimee with full one-on-one therapy with certified therapists in order for her to be academically successful. Shockingly, after a few exchanges and disagreements, it worked! Once we firmly declared our position and were able to back it up, it was almost like the therapists, teachers, ect suddenly respected us. Each one emailed me back a different response, but they all said how impressed they were with our advocacy and how right we were. Odd.
Last Friday, 7 different professionals came to our house (and 1 via skype) to write out goals and settle the final wording of her plan. It was amazing and so much better than I could have envisioned. In fact, the one therapist that was most intimidating at the last meeting, had jumped on board with our plan. She was so energetic and excited with the long term goals for Aimee. She has high hopes, things that I never pictured Aimee being able to do. She is such an experienced therapist that I am tempted to believe in the hopes too. One of them being that in several years, Aimee will be able to use a motorized wheelchair that is controlled by head motions. Of course, this will depend on so many things, yet, just knowing that there are possibilities like that available to her has gotten me excited again.
The main goal we set for her to reach by her 4th birthday, is to be able to use a switch (like her 'more' button) that is laid in front of her from a prone position (on her belly). The goal is for her to be able to be up on her elbows, lean over to one and extend the other hand to the switch. This is a HUGE GOAL. Somehow a year doesn't seem like enough time with all that would be involved in getting Aimee there, but she has really made big steps this past year in her desire and ability to hold her head up...
All that to say, in the last few weeks, my whole perspective has changed on the school working with Aimee. They are now totally on her side and rooting for her to progress. Totally amazed that we chose to be a bit confrontational and have seen such a big response.
We got the results from Aimee's second sleep study. They determined that with a 50% increase in the inhale pressure, as well as the backup pressure (the one that is triggered if she doesn't breath for a certain amount of time), that her sleep quality would improve. So this week home care came over a couple of times. They adjusted the pressures and brought over about 10 different masks to try out. The one we have been using fits her really perfectly, but causes skin breakdown on the bridge of her nose after just one full night of use. Hardly any of the masks fit her little nose or her nostrils, but there was one that might work. We used it for 4 hours last night and so far, no permanent damage. Hoping for positive changes this time around!
I took Aimee down to the Center for Pediatric Dentistry for her check-up. It was really, really not worth the drive. They brushed her teeth with a regular toothbrush and used a paint brush to put some fluoride one her. I had to ask questions to get them to tell me how her teeth were looking, ect. Really hoping to find a dentist closer to us that will see kids in a wheelchair.
Had to go into Audiology to get new ear molds made again! While there, it was decided that it is time to have another sedated BAER exam done to see if there have been any changes in her hearing over the past 1 1/2 years. We will take her in for that next month.
We had a check up with the GI department and mentioned that the site around her feeding button had been leaking a bit and seemed to be indenting her skin/stomach muscles around it. Since she first got the button in 2010 we hadn't changed the size, so they took it out and used a measuring device to see if the length into her stomach needed to be changed. It was a bit nerve wracking because they couldn't get the measuring device out of her when they were done. Telling me it had never happened before, didn't really make me feel better. They did finally manage to get it out and decided to up her button by 2 sizes (from 2 cm to 3 cm).
Neurodevelopmental gave us a referral to the Durable Medical Equipment department for a car seat evaluation. She is so tall that she is on the biggest settings for her current seat. We knew from the experiences of ordering her bath chair and her wheelchair that it would take several months to get a request through insurance, so we decided to pursue it before we needed it this time. :) Hoping our new, not so great, insurance company approves the request.
This Wednesday I met with the local Social Security office to determine if Aimee is eligible to receive Disability Benefits. Apparently, what they neglected to tell me during the 3 previous conversations, is that these benefits are a welfare program. Once she is 18, we can apply for her to receive them as an adult, but for now, she doesn't qualify due to our income being above poverty level. Would have been nice to know before pursuing it further.
2.12.12
A strange, wonderful thing happened today. Something that will probably seem silly to even write about to anyone else, but to me it was wonderful. Aimee was able to use a regular hair band. You know just a plain stretchy hair rubber band.
I realize this seems trivial, however, one of the many things that my heart longs for with my daughter is to be able to share things with her. When I was little, my mom would let me use this one soft pink color of lipstick that she had. I even still remember the name, 'gold dipped rose'. She let me use her purple eye shadow and wear her shoes (for the brief 3 months that I fit into them). She still lets me borrow jewelry and cooking gadgets.
It may not seem important to anyone but me, but I am so thankful that Aimee and I can share hair rubber bands. It makes my heart smile.
I realize this seems trivial, however, one of the many things that my heart longs for with my daughter is to be able to share things with her. When I was little, my mom would let me use this one soft pink color of lipstick that she had. I even still remember the name, 'gold dipped rose'. She let me use her purple eye shadow and wear her shoes (for the brief 3 months that I fit into them). She still lets me borrow jewelry and cooking gadgets.
It may not seem important to anyone but me, but I am so thankful that Aimee and I can share hair rubber bands. It makes my heart smile.
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