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| Being silly at her photo session. |
Haleigh's Journey
Friday, September 14, 2012
Growth Spurt
We had Haleigh at the Endocrinologist on Wednesday. Her doctor has been regulating her growth hormone to see if it will help her out. November will be one year of her being on it. Since May, Haleigh has had the biggest growth spurt ever. She gained just about 2 lbs. She is now 18.2 lbs. She also grew 2 inches. She is just at 29 inches. It is hard to tell at this point if this is the growth hormone, or if she had a typical 2 year old growth spurt. She is still super lean and itty bitty. She will be 3 on the 28th, and we are hoping to have her in size 3 diapers by then. HA!
Tuesday, August 7, 2012
Hard work pays off!!
Words can not describe how happy i am for this little girl. She is such a fighter and she makes us proud every day!!
Thursday, June 28, 2012
NIH Day 3 and 4
Yesterday was such a busy day, but for the most part went really well. She saw a nutritionist in the morning. She was very happy with her diet and impressed with her appetite. Haleigh does have low bone density so she would like to see her take in more calcium and possible a vitamin D supplement. No big deal.
Neuropsych evaluated her to see where skills are based on milestones. She did much better with this than she did with the infants and toddlers evaluation. It was a much better environment so Haleigh was able to focus better. She said she can tell that Haleigh knows how to perform tasks, but her motor control is keeping her from doing things. She was given some exercises to help with this stuff and she will be starting occupational therapy soon.
Audiology did a hearing test. He said he feels like she has at least mild hearing loss which could be impacting her speech. He said it is probably caused by all of her ear infections. ENT just checked to see if her tubes were still in place. He didn't have much to add to the cause.
She saw Dr. Gropman from Neurology. She saw her before at Children's. She was very pleased with her progress and just wants to get her started with OT to get her fine motor skills refined.
Physiatry checked her foot braces and her mobility in her joints. He said she has really loose ligaments and a lot of movement in her knees and ankles. Also in her elbows and hands. He said she is strong and doing great with her movements.
Today she had PT which was nothing new for her.
She also had a photo session so that the genetics docs could get some shots of various body parts.
Blood work didn't go so well. She lost her entire breakfast because she got so upset. They got what they needed and said if they decide they want more they will get it when she is sedated tomorrow.
The eye doctor said her eyes look good. She is using both of them together. He did say her corneas look small so he did photos too. He will also be doing an eye exam under sedation tomorrow.
Considering how much she has been through, Haleigh is holding up really well. Aside from throwing chow in the lab, she has been very cooperative.
Her MRI got moved to 0800 so that will make not eating much easier.
Neuropsych evaluated her to see where skills are based on milestones. She did much better with this than she did with the infants and toddlers evaluation. It was a much better environment so Haleigh was able to focus better. She said she can tell that Haleigh knows how to perform tasks, but her motor control is keeping her from doing things. She was given some exercises to help with this stuff and she will be starting occupational therapy soon.
Audiology did a hearing test. He said he feels like she has at least mild hearing loss which could be impacting her speech. He said it is probably caused by all of her ear infections. ENT just checked to see if her tubes were still in place. He didn't have much to add to the cause.
She saw Dr. Gropman from Neurology. She saw her before at Children's. She was very pleased with her progress and just wants to get her started with OT to get her fine motor skills refined.
Physiatry checked her foot braces and her mobility in her joints. He said she has really loose ligaments and a lot of movement in her knees and ankles. Also in her elbows and hands. He said she is strong and doing great with her movements.
Today she had PT which was nothing new for her.
She also had a photo session so that the genetics docs could get some shots of various body parts.
Blood work didn't go so well. She lost her entire breakfast because she got so upset. They got what they needed and said if they decide they want more they will get it when she is sedated tomorrow.
The eye doctor said her eyes look good. She is using both of them together. He did say her corneas look small so he did photos too. He will also be doing an eye exam under sedation tomorrow.
Considering how much she has been through, Haleigh is holding up really well. Aside from throwing chow in the lab, she has been very cooperative.
Her MRI got moved to 0800 so that will make not eating much easier.
Tuesday, June 26, 2012
NIH Day 2
Today Haleigh got her very first government issued ID. I am still unsure why she had to get one, but they said she needed it. Silly!
She started her day with a speech pathologist. She did a swallow study on Haleigh. Apparently Haleigh has to do some tongue exercises. I have no idea how you exercise a tongue. My degree in fitness did not cover that one!!
She next met with an occupational therapist. She just wanted to see where Haleigh was behind. She said she is delayed but she is on the right track to getting better fine motor skills.
Endocrinology was a consult and we will see the actual doctor later in the week. I don't know when because it is not on our schedule.
She had pre-anesthesia which was the doctor making sure she was healthy enough to be put to sleep for such a long period of time. Her heart condition is the main concern for them because they do not want her to lose oxygen while she is down. They prefer to have her breath on her own instead of using a machine. She will not go any longer than 3 hours. I didn't realize how many tests they were doing. They will look at her brain, eyes. They will also do a skin biopsy and there are two other tests that were a bunch of letters put together and i don't remember them right now.
The immunologist came to rule out a primary immune deficiency which he said he doesn't believe she has. Even though she gets sick often, she can get better on her own, or without much more than an antibiotic. He was great. He explained things really well. He will be ordering blood work just to be sure.
Haleigh held up pretty well. The last appointment was hit or miss but we let her play in the sink so she was happy and wet!!
She started her day with a speech pathologist. She did a swallow study on Haleigh. Apparently Haleigh has to do some tongue exercises. I have no idea how you exercise a tongue. My degree in fitness did not cover that one!!
She next met with an occupational therapist. She just wanted to see where Haleigh was behind. She said she is delayed but she is on the right track to getting better fine motor skills.
Endocrinology was a consult and we will see the actual doctor later in the week. I don't know when because it is not on our schedule.
She had pre-anesthesia which was the doctor making sure she was healthy enough to be put to sleep for such a long period of time. Her heart condition is the main concern for them because they do not want her to lose oxygen while she is down. They prefer to have her breath on her own instead of using a machine. She will not go any longer than 3 hours. I didn't realize how many tests they were doing. They will look at her brain, eyes. They will also do a skin biopsy and there are two other tests that were a bunch of letters put together and i don't remember them right now.
The immunologist came to rule out a primary immune deficiency which he said he doesn't believe she has. Even though she gets sick often, she can get better on her own, or without much more than an antibiotic. He was great. He explained things really well. He will be ordering blood work just to be sure.
Haleigh held up pretty well. The last appointment was hit or miss but we let her play in the sink so she was happy and wet!!
Monday, June 25, 2012
NIH day 1
Let me start off by saying, The Children's Inn is an absolutely wonderful place. They are totally run by volunteers and off of private donations. They have so many activities for the kids. Multiple play rooms, computer rooms, an art center, and an exercise area. The rooms are just like hotel rooms and if you forget anything from home, you can borrow it from the INN. So wonderful!!!
So day 1 went pretty well. It feels like we were pulled in many directions. The physical took a few shots because we were running into other appointments. She had and EKG and and ECHO this morning. Both of these she has done before. She screamed during the EKG and wiggled like crazy during the ECHO. But, thats why these docs are in pediatrics. She also saw a dentist. She just counted her teeth and checked her palate. She also took pictures of her mouth and what teeth Haleigh would let them see. Surprisingly Haleigh never cried. She just gave them the stink eye. She did get a pretty rad tooth brush out of it. And a rubber glove. She has successfully collected 1 rubber glove from every department. They will all be 1 shy of a pair.
Tomorrow will be a very long day. She has appointments from 0800 to 1700. YIKES.
So day 1 went pretty well. It feels like we were pulled in many directions. The physical took a few shots because we were running into other appointments. She had and EKG and and ECHO this morning. Both of these she has done before. She screamed during the EKG and wiggled like crazy during the ECHO. But, thats why these docs are in pediatrics. She also saw a dentist. She just counted her teeth and checked her palate. She also took pictures of her mouth and what teeth Haleigh would let them see. Surprisingly Haleigh never cried. She just gave them the stink eye. She did get a pretty rad tooth brush out of it. And a rubber glove. She has successfully collected 1 rubber glove from every department. They will all be 1 shy of a pair.
Tomorrow will be a very long day. She has appointments from 0800 to 1700. YIKES.
Thursday, June 14, 2012
It's been a while!!
I am so sorry that i have not updated in a good while. Things have been pretty crazy. As you may know, Haleigh was supposed to go to NIH in late April. However, she got sick so we had to cancel her appointments. She can't be around the other kids while she is sick. Totally understandable. I don't want her to get the others sick, especially the high risk kids. We are scheduled to go back The week of June 25th. Her schedule is still crazy busy but it's all for a diagnosis.
She started speech therapy a few weeks ago. She has not done much yet, but Josh and I are getting a lot of info from the therapist on ways we can help her at home. We are trying to get an I pad through insurance to use as a communication device. It is amazing what these things can do. I never realized how much they can help. Hopefully insurance will pay for the I pad and the speech therapy apps as well. Most of the apps are around 200$ but from what I hear are very worth it. If insurance will not pay we will try a grant or just suck it up and pay for it ourselves.
Physical Therapy is going great. She is starting to get the ability to balance herself for a few seconds and will take a step with a controled stop. Balance seems to be the biggest issue. She will walk with assistance anywhere. She is learning to steer her walker. Therapy uses a trail behind walker that has turning wheels so it makes it easier for her to steer.
The most overwhelming thing we have going on right now is getting her set up to start school when she turns 3. She will start in a school for children with special needs. During her day she will not only have education, but she will also have PT, OT and speech therapy. I beleive the program is 3 days a week for 2.5 hours a day. There is so much that goes with this school. We are working on her education plans for when she starts. And we have to go to the school for an evaluation so that they can determine eligability and needs.
Thats all for now. I will definatly update you all on NIH.
She started speech therapy a few weeks ago. She has not done much yet, but Josh and I are getting a lot of info from the therapist on ways we can help her at home. We are trying to get an I pad through insurance to use as a communication device. It is amazing what these things can do. I never realized how much they can help. Hopefully insurance will pay for the I pad and the speech therapy apps as well. Most of the apps are around 200$ but from what I hear are very worth it. If insurance will not pay we will try a grant or just suck it up and pay for it ourselves.
Physical Therapy is going great. She is starting to get the ability to balance herself for a few seconds and will take a step with a controled stop. Balance seems to be the biggest issue. She will walk with assistance anywhere. She is learning to steer her walker. Therapy uses a trail behind walker that has turning wheels so it makes it easier for her to steer.
The most overwhelming thing we have going on right now is getting her set up to start school when she turns 3. She will start in a school for children with special needs. During her day she will not only have education, but she will also have PT, OT and speech therapy. I beleive the program is 3 days a week for 2.5 hours a day. There is so much that goes with this school. We are working on her education plans for when she starts. And we have to go to the school for an evaluation so that they can determine eligability and needs.
Thats all for now. I will definatly update you all on NIH.
Friday, April 27, 2012
April Cardiology
Today Haleigh had her follow up Cardiology appointment. She did A LOT better than the last time. She didn't cry at all during the Echo or EKG. Nothing much has changes since her last appointment. The hole of course is still there, however he did notice two holes. He said they sit right next to each other separated by a thing piece of heart tissue. The right side of her heart is still enlarged but not as large as her last appointment. She has a lot of extra blood flow which is making her Right side work very hard. She is still not showing any symptoms so we are going to continue to just watch it. She will be getting an Echo and EKG as a part of her study at NIH in June. We will then return to her Cardiologist in October.
We also took her to do some blood work for her Growth Hormone. We will follow up with Endocrinology in May.
We also took her to do some blood work for her Growth Hormone. We will follow up with Endocrinology in May.
Wednesday, February 8, 2012
Children's Hospital of Philadelphia
Today Haleigh had her follow up appointment at CHOP. She met with Dr. Zackai and her "team". They really are a great group of Doctors. They are communicating with NIH through all of this as well. As a whole the appointment was good. She is very happy with Haleigh's health and general appearance. She said she is well nourished and very happy. She is delayed but progressing, so she isn't worried at all. For height she is in the 50th percentile for a 10 month old, for weight she is in the 50th percentile for a 6 month old.
She took some more measurements of everything and noted what they couldn't use a year ago. For example, her hair is very short and thin for her age. Her "soft spot" is also still open. Most babies close completely by 18 months. She still has no speech but she does show an understanding of what we say and she can do some simple sign language to prove it.
They entered her in a chromosome study. This study will look at each individual chromosome and try to find any damage. Since they can't match a disease or condition they are going to find the damaged chromosome and go from there. Josh and I also gave blood for this study so that they can do some comparisons.
We are also going to do another skeletal survey when we return home. The "bone" doctor is going to take a look and meet with his colleagues to see if there is anything of interest. They didn't give us any specific tests because they are going to talk to the doctors at NIH first. We will probably do all the recommended testing there in April.
So now Haleigh is officially a part of 2 studies. If nothing else, maybe somewhere down the road, she can help out someone else.
She took some more measurements of everything and noted what they couldn't use a year ago. For example, her hair is very short and thin for her age. Her "soft spot" is also still open. Most babies close completely by 18 months. She still has no speech but she does show an understanding of what we say and she can do some simple sign language to prove it.
They entered her in a chromosome study. This study will look at each individual chromosome and try to find any damage. Since they can't match a disease or condition they are going to find the damaged chromosome and go from there. Josh and I also gave blood for this study so that they can do some comparisons.
We are also going to do another skeletal survey when we return home. The "bone" doctor is going to take a look and meet with his colleagues to see if there is anything of interest. They didn't give us any specific tests because they are going to talk to the doctors at NIH first. We will probably do all the recommended testing there in April.
So now Haleigh is officially a part of 2 studies. If nothing else, maybe somewhere down the road, she can help out someone else.
Thursday, January 19, 2012
NIH and Endo
Haleigh saw the Endocrinologist yesterday. She didn't gain any significant amount of weight. She wants to see her back in 3 months. If there is still not change and her labs come back normal they will increase her dose.
On a brighter note, we got our call from NIH. Haleigh will be admitted as an inpatient the week of April 16th. We will be staying either with her in the hospital or at the Children's Inn if they let her go one night. Her testing will determine if she is in the hospital or at the Inn. She has been assigned 2 nurses that will be caring for her the entire week and she is also with a whole team of doctors. They will all review her medical records from birth. They will then determine what they will test her for. It was hinted a few times while on the phone with the nurse, that she will be getting another MRI. This will be her 3rd which really sucks. By the beginning of March we should have a schedule for her week. Then we will know what to expect while we are there. I will be sure to update when i know more about the testing.
We will be heading back to The Children's Hospital of Philadelphia in a few weeks as well. Between CHOP and NIH i hope they can piece something together.
On a brighter note, we got our call from NIH. Haleigh will be admitted as an inpatient the week of April 16th. We will be staying either with her in the hospital or at the Children's Inn if they let her go one night. Her testing will determine if she is in the hospital or at the Inn. She has been assigned 2 nurses that will be caring for her the entire week and she is also with a whole team of doctors. They will all review her medical records from birth. They will then determine what they will test her for. It was hinted a few times while on the phone with the nurse, that she will be getting another MRI. This will be her 3rd which really sucks. By the beginning of March we should have a schedule for her week. Then we will know what to expect while we are there. I will be sure to update when i know more about the testing.
We will be heading back to The Children's Hospital of Philadelphia in a few weeks as well. Between CHOP and NIH i hope they can piece something together.
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