We are beginning to settle into a routine with Aimee's feedings this week. Aside from the digestive issues and the concerns over the exact amount of formula that she should be receiving, the process is going well. She is being weighed weekly on Mondays. At yesterday's weigh in she had lost over a pound from the week before, but it is hard to know if that is due to the digestive problems or the amount of food. We are giving it one more week before we request an increase.
We are scheduled to go in for a consultation with the GI department in 3 weeks to discuss having a G tube put in (the one directly into her stomach). Until that point, we are supposed to carry on as "normal".
Please keep praying for us. Specifically for peace. I (Rosa) have been having several nightmares about hospitals/doctors and am really struggling with losing control and say over Aimee's future. We want to trust God...but going through the process of doing so seems to be more difficult than obtaining the desire to do so.
6.18.10
A piece of good news for us this week: Aimee's pediatrician is allowing us to perform her weekly weigh in on a tracked scale in his office without an appointment or co-pay. What a relief! Just the thought of an extra $30 a week was hurting my brain.
We went down for 2 ultrasounds on Wednesday to follow up on the previous findings. I just spoke with the doctor from Endocrinology this afternoon regarding the results. Overall pretty positive. The large cyst is still there, but the enlarged ovary (they start being concerned over 1.2 cm at this age, it was 4.5 cm) was back in the normal range (.06 cm). Just to be fun though, her left ovary is now enlarged (was 1.1 cm last time, now is 2.1 cm). I will follow up further on these results with Adolescent Medicine on August 11th when we are there to assess her response to the steroid/hormone cream that she is currently on.
I spoke with the Audiologist yesterday afternoon to rediscuss the hearing testing Aimee had done in March. We were finally able to come to a consensus. We will have Aimee fitted for a trial pair of hearing aids from their bank at Children's on August 3rd. There is no way to test her with the hearing aids unfortunately, due to her unique situation, so we will watch her closely for about a 6 week period to determine if the amplification is helping or hurting her. Once that period is over, we will have the Baer test again (the one that she had 3 months ago where she was put under anesthesia) and potentially place an order for permanent hearing devices.
I think that is all, but I can't be sure. May have to update again later as more comes to me.
We went down for 2 ultrasounds on Wednesday to follow up on the previous findings. I just spoke with the doctor from Endocrinology this afternoon regarding the results. Overall pretty positive. The large cyst is still there, but the enlarged ovary (they start being concerned over 1.2 cm at this age, it was 4.5 cm) was back in the normal range (.06 cm). Just to be fun though, her left ovary is now enlarged (was 1.1 cm last time, now is 2.1 cm). I will follow up further on these results with Adolescent Medicine on August 11th when we are there to assess her response to the steroid/hormone cream that she is currently on.
I spoke with the Audiologist yesterday afternoon to rediscuss the hearing testing Aimee had done in March. We were finally able to come to a consensus. We will have Aimee fitted for a trial pair of hearing aids from their bank at Children's on August 3rd. There is no way to test her with the hearing aids unfortunately, due to her unique situation, so we will watch her closely for about a 6 week period to determine if the amplification is helping or hurting her. Once that period is over, we will have the Baer test again (the one that she had 3 months ago where she was put under anesthesia) and potentially place an order for permanent hearing devices.
I think that is all, but I can't be sure. May have to update again later as more comes to me.
6.15.10
Update from last week's appointments.
-WSDS-
Monday we met with Washington Sensory Disability Services. They provided some suggestions, with which we were not entirely impressed. Mainly the specialist recommended that we get a "little room". Essentially it is made of clear plexiglass and is about 2.5 feet tall by about 3+ feet wide. We would attach different items to the inside that Aimee would become familiar with and would always know where they were. The purpose would be to block out sounds, ect that may be overwhelming to her. However, the idea of putting our child in an enclosed room is not very appealing and sounds borderline abusive to us.
She also recommended working with a speech therapist help us discover more about Aimee's communication techniques. Children that are visually and hearing impaired still communicate, but it may be with movements instead of sounds. If we can discover her communication techniques, we can respond to them, which would in turn encourage her to communicate even more.
-ENDOCRINOLOGY-
Wednesday we met with Endocrinology to follow up on testing that Aimee had received. The test results came back normal, which indicated that her increase in estrogen was most likely due to the ovarian cysts. We had also been concerned about her ovary being enlarged, however, they are not sure what is normal in the reproductive system of such a little girl, as they do not typically perform ultrasounds at this age. I am taking Aimee back in tomorrow to have a follow up ultrasound done to track the change in the cysts and the size of the ovary.
-SWALLOW STUDY-
Friday I took Aimee down for a Swallow Study. It was very interesting, almost like a video x-ray. During the study, we worked with all different consistencies of liquids and foods, as well as different types of cups, nipples and spoons to see how Aimee was handling them. Unfortunately, at the end of the study, it was determined that Aimee is not safe to take any form of liquids by mouth. Also, it appears that she very quickly is fatigued while eating solids. Essentially, she ends up breathing food and liquids into her lungs. We were admitted to spend Friday night and most of Saturday at the hospital to switch her over to a feeding tube. We had to learn how to insert the tubing and how to work with the feedings at home. This is a bit overwhelming at the moment and very disappointing for us.
We don't know for sure what happens from here in regards to her eating. We will be following up with dietitians/therapists, having her weight checked weekly, and meeting with her developmental specialist. Soon the decision will be made on whether or not to have a tube surgically implanted or not. It sounds as if this is a strong possibility.
6.3.10
Yesterday, Aimee had her weekly occupational therapy appointment, as well as, a check in with the Neurodevelopmental department at Children's.
What a discouraging day. Aimee was fairly uncooperative with the therapist in the morning. Then, at the clinic appointment, nothing happened. Or so it seemed. Basically, we rediscussed all the aspects of the situation and ended up with the doctor saying "as to the 'why' question, I really have no idea". It appears like we are about to give up on figuring it all out. We are waiting to do a few more chromosomal tests with genetics and will most likely meet with Pediatric Neurology after that (the last department that could have any light to shed). Overall though....we have come to the end of the rope. Sure we'll keep meeting with all of these different departments every couple of months so that they can track her development. There are also a few practical questions to deal with, but...essentially...that's it.
As far as the practical side, Neurodevelopmental is going to talk with Audiology to decide on hearing implements. We are meeting with Sensory Disability Services on Monday to have an assesment done with functional recommendations. Wednesday morning we will be back in Seattle to see Endocrinology regarding the reproductive questions. Friday morning we will be down at radiology to have a swallow study done.
The one piece of quasi good news is that Aimee will not have to wear a helmet. The craniofacial nurse assessed her head shape and detirmined that it would be pointless to try any implementation. She was not overly concerned about the change in shape and also the helmet works to reshape the skull as it grows. Since her skull is growing extremely slowly, this would be fairly pointless.
We will continue to update with Aimee's progress and appointments. Maybe one of these days I can actually get her laugh on video for you. It will make your heart so glad to hear it.
Ps. Please pray for favor as we are reapplying for financial aid and for SSI. We are starting to need special equipment to accommodate Aimee's size and abilities, which we will not be able to afford on our own.
What a discouraging day. Aimee was fairly uncooperative with the therapist in the morning. Then, at the clinic appointment, nothing happened. Or so it seemed. Basically, we rediscussed all the aspects of the situation and ended up with the doctor saying "as to the 'why' question, I really have no idea". It appears like we are about to give up on figuring it all out. We are waiting to do a few more chromosomal tests with genetics and will most likely meet with Pediatric Neurology after that (the last department that could have any light to shed). Overall though....we have come to the end of the rope. Sure we'll keep meeting with all of these different departments every couple of months so that they can track her development. There are also a few practical questions to deal with, but...essentially...that's it.
As far as the practical side, Neurodevelopmental is going to talk with Audiology to decide on hearing implements. We are meeting with Sensory Disability Services on Monday to have an assesment done with functional recommendations. Wednesday morning we will be back in Seattle to see Endocrinology regarding the reproductive questions. Friday morning we will be down at radiology to have a swallow study done.
The one piece of quasi good news is that Aimee will not have to wear a helmet. The craniofacial nurse assessed her head shape and detirmined that it would be pointless to try any implementation. She was not overly concerned about the change in shape and also the helmet works to reshape the skull as it grows. Since her skull is growing extremely slowly, this would be fairly pointless.
We will continue to update with Aimee's progress and appointments. Maybe one of these days I can actually get her laugh on video for you. It will make your heart so glad to hear it.
Ps. Please pray for favor as we are reapplying for financial aid and for SSI. We are starting to need special equipment to accommodate Aimee's size and abilities, which we will not be able to afford on our own.
5.27.10
Yesterday, during Aimee's weekly Occupational Therapy appointment, we met with the school district's resource coordinators for her 6 month review. As a part of the application to to the school district's program, the resource coordinators and I had set goals for Aimee. In every area from communication and motor skills to cognitive abilities, we wrote down a few hopeful targets. I am so glad that we did!
When I originally heard that her 6 month review was coming, I braced myself for major disappointment. I find myself wondering if she is changing at all. Other people always say that she is, but I just barely see it. Yet, as we sat there reviewing the goals, I was incredibly encouraged. Aimee had met almost every single goal we set for her. It was astounding to me. Visual tracking? Check. Responding to Ed and I's voices? Check. Batting at toys? Check. Cooing? Check. Verbalizing moods? Check. And so on. She kept knocking them out of the park! WOW! Good job Aimee. A++++++ on your report card!
When I originally heard that her 6 month review was coming, I braced myself for major disappointment. I find myself wondering if she is changing at all. Other people always say that she is, but I just barely see it. Yet, as we sat there reviewing the goals, I was incredibly encouraged. Aimee had met almost every single goal we set for her. It was astounding to me. Visual tracking? Check. Responding to Ed and I's voices? Check. Batting at toys? Check. Cooing? Check. Verbalizing moods? Check. And so on. She kept knocking them out of the park! WOW! Good job Aimee. A++++++ on your report card!
5.25.10
We made it through a lap of appointments yesterday and as you can see one of us made it through smiling!We finally got Ed in for an appointment with the Naturopath to figure out his sleep issues. He will be going in for a sleep study and blood work to determine if he has sleep apnea or a strain of narcolepsy. The doctor actually thinks it is likely sleep apnea and may be as simple as removal of his tonsils. If this is the case, it would be a huge relief, as he has been struggling with major fatigue his whole life.
Aimee also met with the Naturopathic Pediatrician in the morning for her 15 month check up. She is staying on track with her physical health. She weighed in at 23 pounds (50th percentile) and she is quite tall at 32 inches (90th). Her head is still growing well below the curve at 42.5 centimeters (still growing though!). The only concern that the was raised during this appointment was her head shape. Owing to the fact that she is unable to support her own head, she is continually putting pressure against one side of her skull. It is starting to flatten on the the sides and back slightly. We may go back to Craniofacial to discuss the options for positioning pillows and a helmet.
Next, we met with Genetics. No new information here. All the blood tests that have been run thus far have come back normal. They requested 2 new DNA studies to be done for 2 syndromes that have similar symptoms to Aimee's case. Again, these will take a few weeks to find out if insurance will cover them and then a couple of months to get results. A swallow study was also ordered to be sure that Aimee's low muscle tone isn't causing her to literally inhale food/liquids when she is eating. This may also provide helpful tips for us on the consistency of food/liquids that would be best for her. We were also able to get temporary disability codes to apply for SSI and reapply for financial aid. These will be adjusted when a true diagnosis is found.
After that appointment we met with Orthopedics. This was actually a nice, quick appointment. The doctor said that her feet and joints look beautiful. He was so pleased that he pushed back her next check up with him for 6 months. We are not dissapointed to have one less appointment to drive down for!
Checked on Orthotics and everything looks great there. We will not need a new bar or shoes for a few months.
This next week we will be with Occupational Therapy and Neurodevelopmental. We are praying for God to bring wisdom to the doctors and unravel this conundrum. Feeling a bit overwhelmed myself. I am fairly certain that my brain is crossing wires and confusing signals. Also, please be praying for Ed and I. In the midst of all the pulls for our time and attention, we don't want to lose sight of eachother.
5.13.10
Received the blood work results back from Endocrinology yesterday by mail. The letter simply stated that all the results were normal and that we would hear more at the follow up appointment with this department on June 9th. Honestly, I'm not sure what this means.
I have recently received several applications to attend seminars and retreats for families with blind or severely visually impaired children. It reminds me of why we are hoping to find a diagnosis. Without it we can't apply for disability or obtain approvals for these other types of resources. Lord, give us the perseverance!
Our next big appointment day is May 24th. I will update again after that.
I have recently received several applications to attend seminars and retreats for families with blind or severely visually impaired children. It reminds me of why we are hoping to find a diagnosis. Without it we can't apply for disability or obtain approvals for these other types of resources. Lord, give us the perseverance!
Our next big appointment day is May 24th. I will update again after that.
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