I just accomplished an amazing feat. It was daring, tricky, slightly foolish. I moved Aimee from her chair onto the changing table, changed a big poopy diaper, and moved her back to her chair...while I had Caleb in the moby wrap. Don't tell Ed or my mom. :) It is not an endeavor I would recommend to anyone else.
This week's recap:
Monday-After the chiropractor appointment, we went to see the midwife for our final check up. Everything is fine in that regard. I am healing really well and honestly already feel like myself. Well physically anyways. Emotionally is another story this time!
Tuesday-Met with Neurology in Seattle (thank you Grandma Laurie for coming along). Had a miracle on our way in to the hospital. I went to put Aimee in her chair from her carseat and somehow (although I am always so paranoid about this and double check) her chair wasn't hooked together all the way. When I set her in it, the chair slid apart, sending Aimee head first towards the cement. EEK! I honestly think it was a miracle. Somehow when the chair hit the parking garage floor, the headrest tilted forward drastically and caught Aimee's head before it reached the cement. Instead of a head injury, we just had one freaked momma.
The appointment was brief. The doctor decided to increase the dose on one of her seizure meds. Her body has acclimated to them and her seizures had increased from 1-2 a week to about 1 per day. I really hate to increase them, however, we haven't seen any major side affects from the medications and have to pick the lesser of the evils.
That evening, Aimee, Caleb, and I met up with Ed in Bellevue at Overlake Hospital for Aimee's second Sleep Study. This time we brought the BiPap machine along with us and had it on during the study. We should find out results in about 6 weeks. The technicians were concerned about the mark and ulcerations on Aimee's nose. Just the week before they had found out about a product called Baby Tape, which is meant for sensitive and fragile skin. They sent us home with the website to order from, as well as, a starter supply. We have decided to take her off of the machine for a few days anyways though, as the wound doesn't appear to be healing. Hoping that if we can get it healed (at least no open wound), then the baby tape will stop the friction from happening again.
Wednesday-We headed home from Bellevue on Wednesday morning to meet with the the school district to evaluate Aimee for her IEP (Individual Education Program). She is turning 3 in a month and this is the "transition" time. Instead of being focused on her needs in the home, at 3 it changes to being about what she needs in order to be successful at school. In practical terms, this will mean an end to her speech and occupational therapy.
Let me back up a bit. Aimee has had therapy through DDD (Division of Developmental Disabilities), which is a part of DSHS, since she was around 8 months old. This was coordinated through the school district's birth to 3 program. We have had various weekly visits from speech, occupational, and physical therapists at our home from SPARC (Skagit Preschool and Resource Center) since that time. In particular, Aimee's Occupational Therapist has been working with her this whole time. Aimee has a special relationship with the OT. She really enjoys working with her and no one can get Aimee to work as hard as Shaun can. I would really hate to lose this therapy, as it has been the most effective methods of stimulating Aimee.
Once Aimee turns 3, she obviously doesn't qualify for the birth to 3 funding any longer. Then it is the school's responsibility to meet these needs. This happens at the same time as the transition from family/home focused to individual/school focused. Legally, the school has to provide Aimee with the services she needs to be successful in school. HOWEVER, this school district doesn't have an Occupational Therapist anymore. They have an assistant and they have a contract with an OT that comes up once a month from Oregon and also does work through the assistant via Skype.
The school is also planning to continue group speech therapy once a week for about 15 minutes in the classroom with no one-on-one speech therapy.
So here we are, after meeting with the school psychologist, resource coordinator, SPARC's Speech Therapist, the school ST, Aimee's preschool teacher, the teacher of the visually impaired, the school's hearing teacher, the district's Physical Therapist, and the said OT assistant. The purpose of this meeting was to evaluate Aimee so that we can set goals for her coming year and then determine how to help her meet those goals through the school.
Now it is up to me, Aimee's advocate, to fight for her. To say that she must have a certified therapist work with her weekly in order for her to be successful in school. Also, that she must have one-on-one speech therapy, as her ability level is dramatically different from her peers.
Honestly, I'm tempted to throw in the towel. This confrontation does not tempt me in anyway. I was so intimidated in the meeting by one particular individual. When I said I did not think this therapy was sufficient, she basically told me that I will have to pay for therapy privately and that school therapists don't have time to be as involved with the students. However, several of her therapists and her preschool teacher are privately telling me that I have to fight. Basically I have to research, learn my rights, and demand them. :( Anyone with experience or wisdom in this area, please share it with me!
That afternoon we met with Aimee's OT at home. She provided us with a few resources regarding this transition to the school, which will give me a starting point in my research.
Thursday-Easy day, just speech therapy. The therapist is continuing to work with Aimee towards the goal of making choices. We are still primarily using food wrapped in netting to accomplish this. Aimee is so easy going that we can't find anything else that she dislikes enough to force her to make a choice. The only food we have found so far that she really disliked is onions.
Friday-Today we took Caleb to the Naturopath for his 6 week well-child check. He is doing great in all areas. Already weighs in at 12 lbs 15 oz and is measured at 23 1/2 inches long. It is such a daily shock to see him already developing abilities that Aimee may never have.
1.23.12
Anyone have any recommendations for Aimee's nose?
It's from the mask on her BiPap machine. I would like to find something to cover it with that won't interfere with the mask seal, but that will keep her skin from deteriorating underneath it.
Poor child looks like a typical kid her age right now, but for less fun reasons. She has a big scrape on her chin (fingernail), a dime size bump on the side of her head with a red mark (no idea what it is from), and a sore/scab on her ear (assuming from her hearing aid). I wish sometimes that she would fuss or cry when she gets hurt. Last week, I must have scraped her back with my wedding ring as she had a deep scrape similar in diameter to the top of my ring, but I had no idea I did it, because she doesn't make a peep!
It's from the mask on her BiPap machine. I would like to find something to cover it with that won't interfere with the mask seal, but that will keep her skin from deteriorating underneath it.
Poor child looks like a typical kid her age right now, but for less fun reasons. She has a big scrape on her chin (fingernail), a dime size bump on the side of her head with a red mark (no idea what it is from), and a sore/scab on her ear (assuming from her hearing aid). I wish sometimes that she would fuss or cry when she gets hurt. Last week, I must have scraped her back with my wedding ring as she had a deep scrape similar in diameter to the top of my ring, but I had no idea I did it, because she doesn't make a peep!
1.20.12
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| Aimee sitting in the tumble form chair she received from her friend Cami on Wednesday! :) |
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| Playing together this afternoon |
As you probably know from the news or from experiencing it yourself, this past week has been filled with beautiful, snowy days. We ventured out a few times during the week to make it to a few appointments.
On Monday, I took Caleb into Skagit Valley Hospital for his newborn hearing screening. He passed both ears, but so did Aimee at that age. It wasn't until she was around 18 months that we realized she was hearing impaired. We feel it is important to keep an eye on his hearing too, since we are not sure what symptoms of Aimee's are related to her disability.
On Tuesday, Nana Annette came with us to Seattle children's for an appointment with Neurodevelopmental. We always look forward to meeting with this department as the doctor is willing to answer any questions about any area of need or concern we may have. We talked about diapers and what happens when Aimee outgrows regular sizes, but is still too small for adult diapers. We will be needing to make adjustments here soon. Her bladder capacity is outgrowing our current system.
We also received a referral to the durable medical equipment department to look into purchasing a specialized car seat. She hasn't outgrown hers yet, but we are on the biggest setting and it takes so long to get equipment!
I asked the doctor what we need to be aware of for the coming 5-10 years. We feel like we are continually watching every system of her body for anything unusual. He feels like we have probably encountered most areas of problem that we will have, except breathing problems, hip displacement, and scoliosis. Just to be safe, he sent us over to radiology after our appointment for a quick pelvic x-ray to check on her hips. We'll get the results on that next week(ish).
Wednesday, we stayed home and spent a relaxing day by the fire with Nana and Papa, who drove up through the snow to help me with Aimee for the day. Both of Aimee's therapists had to cancel their appointments with us due to the weather.
Thursday, Ed took the day off of work to drive with us down to Bellevue Children's to meet with the Pulmonary Sleep Clinic. Aimee has been using the BiPap machine every night and keeping it on for 12 hours about 5 nights a week. However, we have not noticed a significant improvement in her energy levels. The doctor had a nurse go over chest therapy with us again. She is obviously expecting Aimee to have pneumonias begin at some point due to her low muscle tone. She even considered sending us to the chest clinic right now before they begin. Thankfully, we're going to hold off on that for now.
Last time we met with her, she had blood work drawn to check on the Carbon Dioxide levels in Aimee's blood. We had that test redone yesterday to see if the machine has made any difference towards lowering it. We'll find out the results next week.
The Pulmonary doctor set up a Sleep Study appointment for next Tuesday night. It will be similar to what we did last time, except we will bring the BiPap with us and she will wear it during the test. This will help them determine what the pressure levels need to be at for her and hopefully give us some actual benefit to her using the machine.
We were hoping to get some resolution in this appointment for issues we have been having with the machine, such as sizing and the continual red mark on Aimee's nose. However, it doesn't sound like they have many good options, at least for the mark. One of Aimee's therapists recommended using second skin, which is used for burns to protect skin. I am hoping to try this out soon, even though it is not a recommended item by the home care company.
1.12.12
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| Caleb turned 1 month old yesterday |
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| Amazing ramp Ed built |
Ed was able to build us a wonderful ramp while he was on leave. Next he'll be working on a railing :). Kinda important. And then, we will look towards paving the driveway next to have a smooth transition for the chair. But, for now, this is a major improvement and allows me to take Aimee in and out of the house in her chair. Actually, it also allows me to get the chair into the house, which I wasn't able to do very easily.
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| Cousin Guinevere's birthday party |
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| We love parties! |
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| Especially parties with fun cousins |
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| Aimee taking in the Christmas family fun from the floor |
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| Two babies that love their daddy-o SO much |
We measured Aimee the other day and she is 39 1/2 inches tall, which is up to Ed's hip. My goodness, this child is definitely doing well in the growth department!
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