My two amazing little girls...

[avanlandingham]

I have two amazing daughters that both have spine issues. Gracie is 4 1/2 years old and was born with C2-C4 fused, known as Klippel Feil Syndrome. From a few months old she would not turn her head to her left and therapy did not help, we were sent to a orthopedic and it was found. She has grown out of the symptom and does not show any symptoms right now.



Tayla is now 20 months old. When she was born we didn't know that anything was wrong but we shortly found out differently. At 3 weeks old she stopped breathing and we performed CPR and her diagnosis was found at a local hospital with an MRI but was decided that it was a positional mistake so we were sent home with an apnea monitor.

Five weeks later the apnea monitor started alarming for low heart rate and she was taken by ambulance to a local hospital, having to be intubated on the way. They couldn't give us any answers and couldn't get her off the ventilator after week so we had her transferred to Riley Hospital in Indianapolis, IN. After a week there and deciding to DNR, I asked for an MRI before completing that decision. The MRI showed the same finding as the local hospital the first time. The diagnoses were very tight upper cervical spine and foramen magnum stenosis with vertebral deformities and profound myelopathy. Tayla was in surgery only 2 hours later for a cervical laminectomy with foramen magnum craniectomy. A month later she received a trach and g-button, due to not being able to keep her CO2 levels low enough on her own.
She has made and is still making strides. When she had surgery she was completely paralyzed and now she moves everything just not often. Recently she has begun to wave her fingers to say hi and bye. She loves to try to stand and bare weight on her legs, she needs a stander though and insurance denies it. Just a few weeks ago she bared weight on her arms while we had her laying on her stomach.



I just wanted to share my story and possibly find someone that has or is going through similar situations.

[KBear]

Welcome to the forum and I'm sorry for the circumstances that bring you here. I'm not sure with different things in your state, but I know my sister has been able to get some of my niece's therapy equipment paid for through our state. My niece was born with a chromosome deletion, called 1p23, basically she is missing a piece of chromosome 23 and it causes her body to malfunction in different ways. She will be 10 in June of this year and is also beginning to bare weight on her legs and simulate walking motion, she is also rocking back and forth, like trying to crawl. I fully believe she will walk one day, it's just going to take her longer than most. Now she has some different equipment that they used to help her get used to being upright in a standing position and getting her to bare weight. I know all of that stuff is outrageously expensive and a lot of insurances don't cover it. Even for her wheelchair her insurance wanted her to have one that she could control herself, yet they wouldn't take into consideration that she was not capable of doing it herself and needed one that her mom could push. After an 8 year wait, my niece finally got on Medicaid (but there are ways to get it quicker). This is in addition to the private insurance her parents have. They also do not look at my sister and her husband's income, since she is disabled, they go off of the child's income (which is obviously zero), as they would not qualify under normal circumstances. So now they use their insurance for a primary and medicaid picks up the balance. This is how they were able to get her wheelchair (which was going to be several thousand without it) and some of her other equipment. They have also received in home nursing care through Medicaid and more therapy. I don't know if this would be an option to help you all on getting the equipment that is needed for your daughter, but it would be worth looking into.

I'm not at all familiar with the c-spine issue your daughters have, so no help there. They are gorgeous little girls.
Kathy

[Cindylou]

I wanted to welcome you to the forum as well. I'm very glad Kathy has been able to provide you with some possible leads, having a niece with disabilities herself. What state are you in? You have really faced some difficult challenges with your young daughters and you sound like an amazing Mom. So unfortunate you are having to fight insurance for a walker for Tayla. It's just a crime, isn't it? You pay in and pay in and pay in to have decent health coverage, and then when you need to tap in and get something covered, they're not your ally but your enemy, fighting you all the way. For some of us, we don't find out we have a likely congenital spine condition until we are middle aged and already facing an arthritic breakdown of the body, you know? (translate that to say: we lived full lives without incident, and I believe your daughters have that potential as well) I hope some others read your story and come forward with their own story. I can't say I am aware of any current members who have dealt with a situation likes yours, but hopefully some will find their way to you from your post. Good luck and welcome again! Cindylou

[ajj1001]

Welcome and thank you for sharing your story so that others can use your experience. Your girls sound wonderful.

alison x

[avanlandingham]

Welcome to the forum and I'm sorry for the circumstances that bring you here. I'm not sure with different things in your state, but I know my sister has been able to get some of my niece's therapy equipment paid for through our state. My niece was born with a chromosome deletion, called 1p23, basically she is missing a piece of chromosome 23 and it causes her body to malfunction in different ways. She will be 10 in June of this year and is also beginning to bare weight on her legs and simulate walking motion, she is also rocking back and forth, like trying to crawl. I fully believe she will walk one day, it's just going to take her longer than most. Now she has some different equipment that they used to help her get used to being upright in a standing position and getting her to bare weight. I know all of that stuff is outrageously expensive and a lot of insurances don't cover it. Even for her wheelchair her insurance wanted her to have one that she could control herself, yet they wouldn't take into consideration that she was not capable of doing it herself and needed one that her mom could push. After an 8 year wait, my niece finally got on Medicaid (but there are ways to get it quicker). This is in addition to the private insurance her parents have. They also do not look at my sister and her husband's income, since she is disabled, they go off of the child's income (which is obviously zero), as they would not qualify under normal circumstances. So now they use their insurance for a primary and medicaid picks up the balance. This is how they were able to get her wheelchair (which was going to be several thousand without it) and some of her other equipment. They have also received in home nursing care through Medicaid and more therapy. I don't know if this would be an option to help you all on getting the equipment that is needed for your daughter, but it would be worth looking into.

I'm not at all familiar with the c-spine issue your daughters have, so no help there. They are gorgeous little girls.
Kathy

Thank you for responding! Medicaid is the only insurance that both girls have. They are the one that denied the stander but due to a recommendation from her pulmonologist!! Which infuriates me because she believed that the risks dealing with her spine outweigh the benefits, I don't understand why her pulmonologist even commented on her spine because that is not her specialty and her neurosurgeon completely agreed that it would be beneficial. Grrrrr She currently gets 8 hours at night of nursing for me to sleep and coverage for when I have classes and she is on the ventilator 24 hours a day with around the clock breathing treatments. She actually does have a wheelchair and we didn't have much problems getting it and honestly at this point I would trade the wheelchair for a stander. We only use the wheelchair as something to sit her in at home because we have a double stroller that works better at hauling all of her equipment at the moment but she's quickly going to outgrow the stroller.

[Justin]

avanlandingham,

Welcome to the Spine Patient Society.

Thank you for sharing your story about your two little girls. They look precious. You are a strong mother and I wish you the very best, as I know being a caregiver can be overwhelming. Please let me know if the Spine Patient Society can do anything to help you (and your girls) out. We are here to support you.