Wow I can not believe how quickly the time has passed! Abby will be turning 3 in 5 days! A lot has happened in our lives this past year, so let me catch you up to date... there is a lot so bear with me...
Abby did have her cleft repaired in April of 07 which came with resounding stings of emotional pain. The surgery went well, but her immediate recovery sent her right into the PICU as she was having difficulty breathing and in much pain. I really wish that doctor’s would not sugar coat the reality of situations as we would have been much better prepared for what we would have to endure in the months to come. After she healed about 3 months later we had a swallow test done and found out that she was aspirating and the Children’s Hospital O.T. was very forthright that she never eat by mouth. This news was very disappointing as we were all very excited at the idea of Abby eating and tasting one of the pleasures God has created for our enjoyment... food.
In late July we were off to N.Y. once again to see Dr. Devinski (photo's above... Abby in hospital and with Dr. Devinski) for yet another e.e.g. It was nice to be there in the summer and enjoy all the humidity and green! Abby loved the out door walks when we were all done with her procedure. The e.e.g showed that Abby’s brain was no longer in a state of utter chaos. The doctor explained it as her brain resembling a map of the United States and that prior to the Sabril (seizure med.) all the states were in the wrong spots, the names of the states were all wrong, and every state was at war with the others. Now (July 07), all the states are in their correct spots, the names are all correct and no one is at war with anyone except one state and it is just sending out messages of war, but not firing off. This area in Abby’s brain is in her frontal right lobe. Because the e.e.g is only 2 dimensional and not 3 the doctors do not know if this epilepsy is “leaking” so to speak into her cognitive area of the brain which is on the right side deep in the middle of the upper right lobe. With this said we are unaware of what she may be able to do as far as walking, talking and so on. Prayer in this would be greatly appreciated!!! The Sabril is still working and she is still seizure free going on 15 months now, praise God! He has referred us to another neurologist in CO so we won’t have to travel anymore.
In August of 07 we got x-rays taken of her hips due to a doctor reading her chart from birth and noticed that one of her hips was not developed right. Once I got the CD and passed them along to her pediatrician I kinda forgot about them as we did not hear any news. Well after many frustrating experiences with this pediatrician we changed to another who was willing to work on Abby’s case and he wanted to know the findings and referred us to someone who told us that these x-rays show that both of her hips are falling 1/3 out of the sockets! OYE! “What does this mean?” I asked, and the doctor responded with a request to get another set of x-rays done as these are almost a year old and she wanted to see if her hips have dropped even more since then and she wrote a prescription for hippo therapy which is therapy on the back of a horse. Today we start this therapy which is very exciting as we have heard nothing but great news of the outcome from it. I have yet to take Abby in to get x-rays as our lives are so busy, but it is on my long list of to do’s for Abby. We are also in the process of getting her a squiggles stander for her as this is going to greatly help with her hips to push back into place. After some time with the hippo therapy and the stander we will get another set of x-rays and show them to this rehabilitation doctor with a surgeon that specializes with children in this area and see what our options will be. One is surgery which I pray is not needed and ask for prayer from you as well in this area. 3/3/08 Late side note, we just got back from Praying Hands Ranch in Parker and we met the OT. She is wonderful and we are so excited to start on Monday the 10th. She told us that the horses gate moves the same as the pelvic of the human so after a while the human brain assumes that even though she is on the back of a horse she is moving her pelvic as we would do in walking and it send messages to the leg muscles to then move!!! So incredible! I would love Abby to be covered in prayer with this that the Lord would do miracles... we have heard so many and it would be wonderful is she were on of them!
Phew... what else... Recently in 08 we just got Abby AFO’s which will help correct her feet from rolling in while she is in her stander.
Also, back in February of 08 we took Abbs in for an MRI. This was an original request from Dr. Levisohn (the new neurologist referral from Devinski in N.Y.) I know its crazy but stay with me! This procedure was now being completed in order to send back to Dr. Devinski for a reading due to a major issue with Levisohn. Just so your completely informed and so you know what we endure with this continuing trial I will share with you... We met with Dr. Levisohn in November of 07 (we waited 5 months to get in to see him) and he was wonderful and caring. He wanted to start Abby on a new medication called Keppra which is an anti-seizure med which targets one location in the brain. Sabril is an anti-seizure medication which covers the whole brain. Dr. Levisohn gave me his personal number to call him if anything happed with Abby while on this new medication. Well things did not go well at all as a matter of fact I think those three weeks were the most trying in a long while as Abby reacted horrifically to this drug. Memories of her having her stroke came back full throttle! The endless screaming in shear pain, un-consolable, she would actually shake she hurt so bad! I called Dr. Levisohn 17 times and never hear back from him! I spoke with nurses, and on call doctors that promised that he would call me back and that they could not tell me to take her off as it was his orders and he would have to make that decision! Unbelievable!!!!!!!!!!!!! So we endured three weeks of this... endless days turned into no sleep for me at nights, she would get so upset she would vomit so I was suctioning all the time which made things worse... to say the least it was a nightmare! I finally broke down and make an executive decision and just took her off of this drug not knowing if there would be any repercussions and the next day called Dr. Devinski who called me back in ½ hour! He re-assured me that I did the right thing and to watch her carefully. We put her back on Sabril and she bounced back to her normal self about a week later. So this is why we are not seeing Dr. Levisohn anymore oh and just incase your wondering... no I have still not heard from him. With this knowledge now I we are back to Devinski, but have to go out to N.Y. each year which is a whole other bag of worms... traveling with a child with disabilities is not easy... just think... where do I change her? Just one of the 100 issues I have to deal with and driving is outta the question! Have I sent in the CD to be read? No not yet... emotionally I am not ready yet to hear what the finding are and I am quite busy and just have not had the time to do so.
Christmas 07 we went to see Matt’s Mom in CA. We drove and in a nut shell, Jacob had a temp of 104 when we left and vomited the whole way there. Joey 3 days later woke up, came down stairs laid on the couch and said, “Mommy I don’t want to die” he had a temp of 103 for 2 & ½ days. Christmas evening Matt’s Mom caught this bug and was down and out for 5 days and on the 5th day Abby went to the ER after having a mild to high fever of103.7 for 4 days. She stayed over night as her oxygen levels were 80 and they gave her breathing treatments with a diagnosis of Bronchitis with a touch of Phenomena! Praise God Matt and I did not get it, we Zicamed 24/7! All in all we had a wonderful time in CA if you can believe it! We enjoyed Joan and being together as a family.
Abby is now teething and bless her heart just does not know what to do. She can’t grab a toy or passy and chew on it to relieve the pain, so Motrin is her best friend right now. I am up at nights with her walking, giving meds or suctioning her so prayer for us both right now would be greatly appreciated!
Well, I think I have caught you up to date as of now... I am sorry I have been absent from keeping her blog site updated, but life has been a bit hectic for me.
Abby did have her cleft repaired in April of 07 which came with resounding stings of emotional pain. The surgery went well, but her immediate recovery sent her right into the PICU as she was having difficulty breathing and in much pain. I really wish that doctor’s would not sugar coat the reality of situations as we would have been much better prepared for what we would have to endure in the months to come. After she healed about 3 months later we had a swallow test done and found out that she was aspirating and the Children’s Hospital O.T. was very forthright that she never eat by mouth. This news was very disappointing as we were all very excited at the idea of Abby eating and tasting one of the pleasures God has created for our enjoyment... food.
In late July we were off to N.Y. once again to see Dr. Devinski (photo's above... Abby in hospital and with Dr. Devinski) for yet another e.e.g. It was nice to be there in the summer and enjoy all the humidity and green! Abby loved the out door walks when we were all done with her procedure. The e.e.g showed that Abby’s brain was no longer in a state of utter chaos. The doctor explained it as her brain resembling a map of the United States and that prior to the Sabril (seizure med.) all the states were in the wrong spots, the names of the states were all wrong, and every state was at war with the others. Now (July 07), all the states are in their correct spots, the names are all correct and no one is at war with anyone except one state and it is just sending out messages of war, but not firing off. This area in Abby’s brain is in her frontal right lobe. Because the e.e.g is only 2 dimensional and not 3 the doctors do not know if this epilepsy is “leaking” so to speak into her cognitive area of the brain which is on the right side deep in the middle of the upper right lobe. With this said we are unaware of what she may be able to do as far as walking, talking and so on. Prayer in this would be greatly appreciated!!! The Sabril is still working and she is still seizure free going on 15 months now, praise God! He has referred us to another neurologist in CO so we won’t have to travel anymore.
In August of 07 we got x-rays taken of her hips due to a doctor reading her chart from birth and noticed that one of her hips was not developed right. Once I got the CD and passed them along to her pediatrician I kinda forgot about them as we did not hear any news. Well after many frustrating experiences with this pediatrician we changed to another who was willing to work on Abby’s case and he wanted to know the findings and referred us to someone who told us that these x-rays show that both of her hips are falling 1/3 out of the sockets! OYE! “What does this mean?” I asked, and the doctor responded with a request to get another set of x-rays done as these are almost a year old and she wanted to see if her hips have dropped even more since then and she wrote a prescription for hippo therapy which is therapy on the back of a horse. Today we start this therapy which is very exciting as we have heard nothing but great news of the outcome from it. I have yet to take Abby in to get x-rays as our lives are so busy, but it is on my long list of to do’s for Abby. We are also in the process of getting her a squiggles stander for her as this is going to greatly help with her hips to push back into place. After some time with the hippo therapy and the stander we will get another set of x-rays and show them to this rehabilitation doctor with a surgeon that specializes with children in this area and see what our options will be. One is surgery which I pray is not needed and ask for prayer from you as well in this area. 3/3/08 Late side note, we just got back from Praying Hands Ranch in Parker and we met the OT. She is wonderful and we are so excited to start on Monday the 10th. She told us that the horses gate moves the same as the pelvic of the human so after a while the human brain assumes that even though she is on the back of a horse she is moving her pelvic as we would do in walking and it send messages to the leg muscles to then move!!! So incredible! I would love Abby to be covered in prayer with this that the Lord would do miracles... we have heard so many and it would be wonderful is she were on of them!
Phew... what else... Recently in 08 we just got Abby AFO’s which will help correct her feet from rolling in while she is in her stander.
Also, back in February of 08 we took Abbs in for an MRI. This was an original request from Dr. Levisohn (the new neurologist referral from Devinski in N.Y.) I know its crazy but stay with me! This procedure was now being completed in order to send back to Dr. Devinski for a reading due to a major issue with Levisohn. Just so your completely informed and so you know what we endure with this continuing trial I will share with you... We met with Dr. Levisohn in November of 07 (we waited 5 months to get in to see him) and he was wonderful and caring. He wanted to start Abby on a new medication called Keppra which is an anti-seizure med which targets one location in the brain. Sabril is an anti-seizure medication which covers the whole brain. Dr. Levisohn gave me his personal number to call him if anything happed with Abby while on this new medication. Well things did not go well at all as a matter of fact I think those three weeks were the most trying in a long while as Abby reacted horrifically to this drug. Memories of her having her stroke came back full throttle! The endless screaming in shear pain, un-consolable, she would actually shake she hurt so bad! I called Dr. Levisohn 17 times and never hear back from him! I spoke with nurses, and on call doctors that promised that he would call me back and that they could not tell me to take her off as it was his orders and he would have to make that decision! Unbelievable!!!!!!!!!!!!! So we endured three weeks of this... endless days turned into no sleep for me at nights, she would get so upset she would vomit so I was suctioning all the time which made things worse... to say the least it was a nightmare! I finally broke down and make an executive decision and just took her off of this drug not knowing if there would be any repercussions and the next day called Dr. Devinski who called me back in ½ hour! He re-assured me that I did the right thing and to watch her carefully. We put her back on Sabril and she bounced back to her normal self about a week later. So this is why we are not seeing Dr. Levisohn anymore oh and just incase your wondering... no I have still not heard from him. With this knowledge now I we are back to Devinski, but have to go out to N.Y. each year which is a whole other bag of worms... traveling with a child with disabilities is not easy... just think... where do I change her? Just one of the 100 issues I have to deal with and driving is outta the question! Have I sent in the CD to be read? No not yet... emotionally I am not ready yet to hear what the finding are and I am quite busy and just have not had the time to do so.
Christmas 07 we went to see Matt’s Mom in CA. We drove and in a nut shell, Jacob had a temp of 104 when we left and vomited the whole way there. Joey 3 days later woke up, came down stairs laid on the couch and said, “Mommy I don’t want to die” he had a temp of 103 for 2 & ½ days. Christmas evening Matt’s Mom caught this bug and was down and out for 5 days and on the 5th day Abby went to the ER after having a mild to high fever of103.7 for 4 days. She stayed over night as her oxygen levels were 80 and they gave her breathing treatments with a diagnosis of Bronchitis with a touch of Phenomena! Praise God Matt and I did not get it, we Zicamed 24/7! All in all we had a wonderful time in CA if you can believe it! We enjoyed Joan and being together as a family.
Abby is now teething and bless her heart just does not know what to do. She can’t grab a toy or passy and chew on it to relieve the pain, so Motrin is her best friend right now. I am up at nights with her walking, giving meds or suctioning her so prayer for us both right now would be greatly appreciated!
Well, I think I have caught you up to date as of now... I am sorry I have been absent from keeping her blog site updated, but life has been a bit hectic for me.
