For 22 months Finn has had issues sleeping. For 22 months I have had to get up with him 2-3 times a night. Finn and I have not been able to have a full nights rest. I have tried everything. Read everything. Asked everyone for advice/opinions. Nothing has worked. In the last month I have noticed Finn's breathing has been irregular when he sleeps. He snores, coughs, chokes, and even stops breathing in the middle of the night. I discussed this with his Physical Medicine doctor and he said it would be a good idea for Finn to get sleep study done. Thank God. I have wanted one of these done 6 months ago, but was turned down by his neurologist. I guess it's kind of a pain to have one done since they have to hook him up with a bunch of electrodes and stuff, but he needs to have it done! I kind of get the brush off from all the doctors I speak with about Finn's sleeping issues. They all say the same thing; 'it's behavioral. he's manipulating you. you need to just let him cry he'll figure it out' Well that's easy for you to say. You haven't had to experience the same sleepless night over and over again for 22 months!
I know Finn's sleep issues are a combination of things, but if I can slowly cross each one off the list then maybe he will start to get better. I hoping the sleep study will confirm that Finn suffers from sleep apnea and they will want to remove his tonsils and adenoids. Even though I don't love the idea of Finn having surgery done, I think this would improve his sleep immensely! Then I can concentrate on controlling his startle reflexes (that he still has and they prevent him from falling asleep on his own). Finn has never been able to keep a pacifier in his mouth, but he loves to use it when he falls asleep. I am hoping with the help of his speech therapist we can teach Finn how to keep a binky in his mouth. This would also help Finn sleep.
I have done lots of reading on this subject and kids with severe neurological problems or trauma do have terrible sleeping habits. I have come to terms with the fact that I might not ever get 8 hours of uninterrupted sleep again for quite some time, but I need him to at least give me longer stretches than 1-2 hours of him alone in his crib. I could be very happy with 4-5 hour stretches. The sleep study is on Tuesday. Let's hope it gives us some results!
Sunday, April 7, 2013
Easter
We hope everyone had a great Easter. Finn had a good time. He went to an Easter egg hunt and met the Easter bunny...although he was not impressed with him.
Thursday, March 7, 2013
Therapy, Therapy, Therapy...with a side of Botox
Finn's life has gotten really busy the last 2 months. He has started seeing a physical therapist once a week in addition to his occupational therapist. Finn just loves his new PT. She works with strengthening his core muscles as well as working with his legs and feet. We have only been going to her for about a month and a half, but I can already see improvements in Finn's trunk and head control. He is so close to sitting on his own!
This is him in his little bumbo chair, which he never really liked to sit in (probably because he couldn't), but look how he is sitting up straight. He can't hold this position for very long, but he is getting much better at controlling his head and trunk. I really think he will be able to sit by himself someday!
That is so good to see! Finn will go back to get another round of Botox at the end of May and they are talking about putting a little bit more into that left hand, and I think that's a good idea. But until then we will continue stretching and wearing our hand splints.
I am very excited to get all this stuff for him. They should be arriving in time for summer. I am very thankful for the assistance program we are covered under so that we will not have to pay for any of these items, which would easily be like $10,000.
This is him in his little bumbo chair, which he never really liked to sit in (probably because he couldn't), but look how he is sitting up straight. He can't hold this position for very long, but he is getting much better at controlling his head and trunk. I really think he will be able to sit by himself someday!
In OT we have started really concentrating on Finn's eating habits. He continues to only eat 3rd and 4th phase foods in addition to some table foods, if they are soft enough. He is not very good at chewing the harder foods. Its like he wants to mash everything with his tongue...which is hard to do with solid foods. We are also trying to get him to drink from a cup. No sippy cup for him we are going straight to a cup! Finn's issue with cup drinking is that he doesn't close his mouth...like ever! So we have tried giving him thicker liquids, like smoothies, to help him get the hang of it. He is starting to get better, but he really struggles with the closing and sucking aspect of cup drinking. I think we will get there eventually...Finn just takes a little longer to understand what he needs to do. But I am really anxious to get him off this bottle and formula. Yes, Finn still drinks his formula. He just loves it so. I am hesitant about really weening him off of it because he has always struggled with gaining weight. And I know he is not eating enough solids to maintain his weight. We met with a dietitian last month and she gave us a bunch of ideas on how to add extra calories to his diet to get him gaining a little bit more, and hopefully be able to slowly decrease his formula intake. For example, add butter to all of his solid food meals. Simple and easy and will add an extra 100 calories a day. Great...now I just need to go out and buy dairy and soy free butter...
Right now Finn is getting therapy 2 times a week, but that will soon increase to 3 maybe 4 times a week. We are going to start seeing a private OT (right now his OT comes to our house from our Help Me Grow agency) but he needs more than just once a week OT. I am just waiting for them to have an opening to fit Finn in. Also, Finn will be starting speech therapy next week. He will be a busy little boy, but it will be great for him. I really think we will be seeing big changes in him with all this extra help!
Switching gears a little bit....
Last month Finn got 8 Botox injections in his arms. It was pretty painful as a parent to watch the doctor inject your baby 8 times with a needle, but it was quick and I really think it was totally worth it. His hands and arms feel amazing! Especially his right hand. It is like always open now. His left, which is his dominant hand, still is tight, but not at all what it used to be. With daily stretches, I can get his left hand pretty loose, but it's not where we were hoping it would be. But like I said I have noticed HUGE changes in his ability to play with his toys. Before Finn could only really press buttons or play with his toys with his left hand fisted. But now look at it!
That is so good to see! Finn will go back to get another round of Botox at the end of May and they are talking about putting a little bit more into that left hand, and I think that's a good idea. But until then we will continue stretching and wearing our hand splints.
Moving on...
Last month we ordered a bunch of adaptive equipment for Finn. It was a very special day, one I will never forget. If you ever have to order adaptive equipment for your kid in Columbus, you first have to meet with an equipments representative. They will take you thru their warehouse and show you everything they have to offer your kid, and give you their input on what they think will be a good fit for your kid. But that's not the end of it. You have to get approval from your doctor before you can go ahead and start ordering all the stuff you want. Finn and I were meeting with a new doctor, one we had never met before, and she had a reputation. I heard from Finn's therapist and even the equipments rep about this particular doctor we were meeting with and how she has the reputation of being kind of cold and very opinionated. I wasn't too worried though. Over the past 21 months I have met with a ton of different specialists and doctors that I am not intimidated by anyone. Well on the day we finally met with this particular doctor, she came in and introduced herself and just immediately starting messing around with Finn (evaluating his tone and muscle control) after that she went straight to her computer and started reading his chart. I could tell why people would describe her as 'cold'. She asked me about Finn's birth story, which I told her everything. I mentioned that he had a MRI done and she immediately wanted to see it. These were my exact words to her 'be prepared to be amazed'. The first words out of her mouth were 'oh my God'. She couldn't believe what his MRI scan showed. After she saw that she totally softened up. She told me how 'impressed' she was with Finn and how he had such a great range of motion considering what he has to work with. She liked to see how much head control he had, and she also made a point to look me in the eye and tell me how great of a job I was doing as a parent. Now how could I not fall in love with a doctor who is so impressed by my little guy and tell me how awesome I am?! I guess it just takes a really cute, sweet boy for her to let her guard down. It is sad that maybe other families don't get to see that side of her. If that wasn't enough to get me all misty eyed, Finn was very taken with the equipments rep at this appointment. Finn was sitting in his wheelchair 'talking' to me when the Rep went to adjust something on the wheelchair. Finn turned his head and stretched out his arm and immediately started petting and stroking the Rep's face. It was so sweet, and very unexpected since the Rep didn't say anything and Finn didn't have his glasses on. Just another reason why I think Finn sees more than the doctors think. Anyway, Finn will be getting a bath seat, This stroller/wheelchair
And this walker
I am very excited to get all this stuff for him. They should be arriving in time for summer. I am very thankful for the assistance program we are covered under so that we will not have to pay for any of these items, which would easily be like $10,000.
Finn is a busy boy these days, but he continues to do everything we ask with a smile on his face.
Friday, January 4, 2013
Speech therapy update
This morning Finn had a speech therapy re-evaluation. The last time the speech therapists saw Finn was in the end of May. At that point all Finn could say were vowel sounds, G's, and Ya Ya. He was still only eating 2nd phase foods. After that last appointment in May she said he was developing great and put him in the 6-9 month developmental range for his cognitive understanding of language and about a 6 month for his verbal communication. She gave me some advice and said that when he started making new sounds and making progress with his eating habits to call her and she would come and see him. Which leads to this morning.
She was so impressed to see how big he had gotten and how much better he was at sitting up and controlling his head. But more than that she was so pleased to see how vocal he was and all the different noises he makes. He is very social and responds when you talk to him. He understands so many different words and phrases. It's truly amazing. And inspiring. The speech therapist watched Finn and I interact for a little while, then she gave Finn a toy to play with and was impressed with how well he understands cause and effect. He knows what button to press to get the music and lights to go. She asked me how his feeding habits are, and I told her that he is eating 3-4 phase foods and certain table foods as well. He still enjoys having his bottle. At the end of the session she said she would put his receptive communication development at about 12-15 months. His verbal is more like 9-12 months. Then she took the time to tell me how great of a job I am doing with Finn. She said our interaction with each other is amazing and I am the reason that Finn is progressing so well with his language. It meant a lot to me to hear that coming from a professional. I know I get lots of praise and support from friends and family, and while it's great to hear that, I still feel so clueless and lost when it comes to parenting Finn. I second guess myself and constantly wonder if I am doing what is best for him. I am sure every parent feels that way...but nothing has come easy for Finn. We work so hard for his accomplishments, and it's just nice to hear confirmation that I am doing good. That from a professional stand point they would be doing the same thing with him as I do with him on a daily basis. It was good to hear. We left things with keep doing what we are doing. She thinks that he will continue to learn and understand more words, and we are hopeful that he will be able to say words. Maybe a little later than we would like, but at least I know he understands me when I talk to him.
She was so impressed to see how big he had gotten and how much better he was at sitting up and controlling his head. But more than that she was so pleased to see how vocal he was and all the different noises he makes. He is very social and responds when you talk to him. He understands so many different words and phrases. It's truly amazing. And inspiring. The speech therapist watched Finn and I interact for a little while, then she gave Finn a toy to play with and was impressed with how well he understands cause and effect. He knows what button to press to get the music and lights to go. She asked me how his feeding habits are, and I told her that he is eating 3-4 phase foods and certain table foods as well. He still enjoys having his bottle. At the end of the session she said she would put his receptive communication development at about 12-15 months. His verbal is more like 9-12 months. Then she took the time to tell me how great of a job I am doing with Finn. She said our interaction with each other is amazing and I am the reason that Finn is progressing so well with his language. It meant a lot to me to hear that coming from a professional. I know I get lots of praise and support from friends and family, and while it's great to hear that, I still feel so clueless and lost when it comes to parenting Finn. I second guess myself and constantly wonder if I am doing what is best for him. I am sure every parent feels that way...but nothing has come easy for Finn. We work so hard for his accomplishments, and it's just nice to hear confirmation that I am doing good. That from a professional stand point they would be doing the same thing with him as I do with him on a daily basis. It was good to hear. We left things with keep doing what we are doing. She thinks that he will continue to learn and understand more words, and we are hopeful that he will be able to say words. Maybe a little later than we would like, but at least I know he understands me when I talk to him.
Saturday, December 29, 2012
The Good, The Bad, and The Ugly
It's been over 2 months since I last updated, and so much has been going on! The month of December was filled with doctor appointments and therapy sessions so my free time has been limited. So much information has been given to us over the last month that I would like to share. Let's start with the good news...
The Good:
Finn had a follow up visit with his Physical Medicine doctor. If you remember, he was the doctor that wanted to put Finn on Valium because of Finn's high muscle tone. I was super stressed out about this because I was worried about what the medication would do to Finn. Anyway, when the doctor examined Finn this visit, he couldn't believe how much Finn changed since the last time he saw him. Finn's tone has decreased so much that the doctor said that medications like Valium and Baclofen would not be good options for Finn. HURRAY! I was so excited to hear that! Finn's muscle tone has improved so much in every body part except for his hands. No matter how many exercises, stretches we do with his hands they just never open up. So the doc suggested Botox injections in Finn's hands to help decrease the muscle tone in hopes that Finn will start being able to open his hands and grasp toys. Botox is often used with kids who have high muscle tone in a particular body part, like Finn's hands. The Botox will loosen the nerves in his muscles so it will be easier for Finn to move them. Finn will be getting 8 injections in February and it should last him about 4 months. The doc said that some kids just need a few rounds of Botox treatments and the nerves sometimes never stiffen back up, other kids need their injections every 4 months for years and years. I am hoping for Finn to be like the former.
Also, Finn has been doing so well during his therapy sessions. His trunk control has improved so much. He is so close to sitting I can feel it! Right now Finn only has therapy once a week, but after the first of the year he will be starting therapy about 3-4 times a week. I feel that with all the extra therapy we will be getting results out of him. Finn is such a hard working and determined kid. I am very confident that Finn will eventually be able to sit by himself, grasp and hold toys, and I truly believe Finn will be able to speak someday. He tries so hard!
The Bad:
Finn saw his opthamologist earlier this month and the news was heart breaking. He determined based on examining Finn and going off the anatomy of Finn's eyes that Finn is legally blind. Being blind and legally blind are 2 totally different things. Finn can at least see lights and colors. At least he is not in complete darkness all the time. The normal person's focal point is the size of a pin. This is why we can see things so crystal clear. Finn's focal point is the size of a dime, which means basically everything he sees is blurry. 20/200 is considered legally blind. When I asked the doctor if Finn's vision is 20/200 the doctor responds "worse" and that is even with glasses. We won't know just how bad it is until Finn can read an eye chart. It's heartbreaking and there is nothing that can be done to fix his eyes. Maybe I am just stupidly optimistic, but there are times where I think Finn can see more than what the doctors say. He makes eye contact with you...you have to be pretty close to his face but he does it. We will just have to wait until he can tell us more.
We had a follow up with the neurologist as well. Finn has been doing great on his topamax. It has stopped his seizures which is good, but it has totally disrupted his sleeping habits. Finn has never slept very good, but before his seizures started back up he was at least sleeping in his crib and for 4-6 hour stretches. Since the topamax, it has made him super awake at night. One night I was up with him from 1am-6am! Not only has it made him more alert at night, but he has stopped sleeping in his crib. Co-sleeping used to work when Finn refused to stay in his crib, but now that has stopped working. He just won't sleep! It's been very hard on all 3 of us. I begged the neurologist to help me! I requested a sleep study done on Finn since he has never ever slept well. She agreed to do a sleep study on him only after we try a few things. First, we will move around his topamax dosage to earlier in the evening instead of at bedtime and increase his melatonin dosage. If that doesn't work there is a medication we can try to put him on that they use to help aid kids with sleep. I am nervous about that bc Finn always seems to have the opposite effect! I need to give him caffeine or sugar...maybe that will make him sleepy. We have adjusted his topamax for about 3 weeks now, and I think his sleeping has improved, but it still isn't great. I am crossing my fingers that some day not too far into the future that my house will sleep at night!
The Ugly:
Finn is now supposed to wear braces on his legs. We first got them to help decrease the tone in his ankles. However, he has no tone in his ankles anymore but the Physical Medicine doctor still would like him to wear them since it will also help improve his trunk control and help him learn the correct way to walk. Finn hated wearing them at first. He still isn't thrilled about wearing them now, but I can tell a difference in his trunk control since we have been wearing them.
The Good:
Finn had a follow up visit with his Physical Medicine doctor. If you remember, he was the doctor that wanted to put Finn on Valium because of Finn's high muscle tone. I was super stressed out about this because I was worried about what the medication would do to Finn. Anyway, when the doctor examined Finn this visit, he couldn't believe how much Finn changed since the last time he saw him. Finn's tone has decreased so much that the doctor said that medications like Valium and Baclofen would not be good options for Finn. HURRAY! I was so excited to hear that! Finn's muscle tone has improved so much in every body part except for his hands. No matter how many exercises, stretches we do with his hands they just never open up. So the doc suggested Botox injections in Finn's hands to help decrease the muscle tone in hopes that Finn will start being able to open his hands and grasp toys. Botox is often used with kids who have high muscle tone in a particular body part, like Finn's hands. The Botox will loosen the nerves in his muscles so it will be easier for Finn to move them. Finn will be getting 8 injections in February and it should last him about 4 months. The doc said that some kids just need a few rounds of Botox treatments and the nerves sometimes never stiffen back up, other kids need their injections every 4 months for years and years. I am hoping for Finn to be like the former.
Also, Finn has been doing so well during his therapy sessions. His trunk control has improved so much. He is so close to sitting I can feel it! Right now Finn only has therapy once a week, but after the first of the year he will be starting therapy about 3-4 times a week. I feel that with all the extra therapy we will be getting results out of him. Finn is such a hard working and determined kid. I am very confident that Finn will eventually be able to sit by himself, grasp and hold toys, and I truly believe Finn will be able to speak someday. He tries so hard!
The Bad:
Finn saw his opthamologist earlier this month and the news was heart breaking. He determined based on examining Finn and going off the anatomy of Finn's eyes that Finn is legally blind. Being blind and legally blind are 2 totally different things. Finn can at least see lights and colors. At least he is not in complete darkness all the time. The normal person's focal point is the size of a pin. This is why we can see things so crystal clear. Finn's focal point is the size of a dime, which means basically everything he sees is blurry. 20/200 is considered legally blind. When I asked the doctor if Finn's vision is 20/200 the doctor responds "worse" and that is even with glasses. We won't know just how bad it is until Finn can read an eye chart. It's heartbreaking and there is nothing that can be done to fix his eyes. Maybe I am just stupidly optimistic, but there are times where I think Finn can see more than what the doctors say. He makes eye contact with you...you have to be pretty close to his face but he does it. We will just have to wait until he can tell us more.
We had a follow up with the neurologist as well. Finn has been doing great on his topamax. It has stopped his seizures which is good, but it has totally disrupted his sleeping habits. Finn has never slept very good, but before his seizures started back up he was at least sleeping in his crib and for 4-6 hour stretches. Since the topamax, it has made him super awake at night. One night I was up with him from 1am-6am! Not only has it made him more alert at night, but he has stopped sleeping in his crib. Co-sleeping used to work when Finn refused to stay in his crib, but now that has stopped working. He just won't sleep! It's been very hard on all 3 of us. I begged the neurologist to help me! I requested a sleep study done on Finn since he has never ever slept well. She agreed to do a sleep study on him only after we try a few things. First, we will move around his topamax dosage to earlier in the evening instead of at bedtime and increase his melatonin dosage. If that doesn't work there is a medication we can try to put him on that they use to help aid kids with sleep. I am nervous about that bc Finn always seems to have the opposite effect! I need to give him caffeine or sugar...maybe that will make him sleepy. We have adjusted his topamax for about 3 weeks now, and I think his sleeping has improved, but it still isn't great. I am crossing my fingers that some day not too far into the future that my house will sleep at night!
The Ugly:
Finn is now supposed to wear braces on his legs. We first got them to help decrease the tone in his ankles. However, he has no tone in his ankles anymore but the Physical Medicine doctor still would like him to wear them since it will also help improve his trunk control and help him learn the correct way to walk. Finn hated wearing them at first. He still isn't thrilled about wearing them now, but I can tell a difference in his trunk control since we have been wearing them.
Finn continues to work hard and impress everyone will his determination. He continues to surprise me daily, and everything he does whether it be going to doctor appointments or therapy sessions he always wears a smile.
Wednesday, October 24, 2012
Photo Contest
So I entered Finn in a photo contest for kids with Cerebral Palsy. All you need to do to vote for Finn is have a facebook account and click on the link below. The winner gets a free ipad that includes language technology apps. I think you can only vote once a day. We all know Finn is pretty darn cute so lets prove it to the facebook community!
Cerebral Palsy Photo Contest
Cerebral Palsy Photo Contest
Wednesday, October 3, 2012
It was nice while it lasted...
Well a lot has happened this past week and I wish I could say it is all positive. It all started last Wednesday. Finn started acting very strange, a lot like how he was back in January and February. Very needy, crying as soon as I would put him down, not sleeping, and very twitchy. At first I thought it was lack of sleep. He didn't sleep very well Tuesday night so I just went about our day, keeping a close eye on him but didn't see anything too disturbing...until Wednesday evening. When I was getting Finn ready for his bedtime bottle I saw it...a seizure. He had 2 seizures within minutes of each other. I was scared. I was alone (Ethan was out of town) and I wasn't sure what I should do. I gave Finn his bottle and he seemed to be ok. Still very twitchy but not having seizures. I decided to try really hard to get Finn a good nights sleep and I would call his neurologist in the morning. Trying to get Finn to sleep when he is acting like this is near impossible. His twitches wake him up and make him cry. Wrapped in his weighted blanket and the weight of my arms I was able to get him to sleep. I decided to have Finn sleep with me that night since it was essential he got some sleep and I just couldn't risk putting him down and waking him. Finn was able to sleep through the night wrapped in my arms. Me on the other hand, I did not sleep at all. I cried silently to myself all night. Terrified of what was happening to Finn, what other challenges we were going to have to face in the morning. Morning came and Finn appeared to be a little more normal and less twitchy. I still called neurology first thing in the morning in hopes that they could get him in right away. I called Ethan and my mom very sleep deprived and crying. Ethan left his business trip early and came home. My mom called off work and came down. We all waited together to hear back from his doctor. Finn seemed fine. He was happy and smiley and started to act totally normal. I started to think that maybe I had overreacted. Maybe he was just having a bad day. Maybe I didn't see him have a seizure. Neurology decided not to take any chances and wanted him to come in to have an EEG the next day. Even though Finn started to act normal I noticed that he felt very hot. I decided to take his temperature and sure enough he had a fever of 102. This was the first time in 16 months that Finn was sick. That would explain his strange behavior. Feeling a little relieved I went into the EEG appt feeling pretty confident, since fevers can cause seizures in kids who are already susceptible to seizures. Finn's fever went away, we had a nice family weekend, Finn was back to normal. Everything seemed fine again. Until I got a call from neurology on Monday evening. Finn's EEG came back abnormal and showed that he started having seizures again. They want to start him on Topamax. I was heartbroken. I was so confident he was ok. Even though I had been preparing for this news for 7 months it still came as a shock to me. So we started Topamax last night and it will take a month for him to get up to the dosage that they want him on.
Another bit of shocking news happened yesterday. Finn had an appointment with physical medicine. These are the doctors that will be getting him all his adaptive equipment that he needs. The doctor examined Finn and told us that based on what he is seeing in Finn he has a new diagnosis for him. Cerebral Palsy. When he said that, it felt like my heart was ripped out of my chest. Up until this point the only medical diagnosis was developmentally delayed...they didn't know how else to categorize Finn. But this doctor said that based on Finn's motor skills (or lack thereof) that he meets the Cerebral Palsy criteria. This also helps for insurance purposes and helps us get all the adaptive equipment that Finn needs. The doctor also talked about putting Finn on medication for his tone issues. Since Finn's seizures started up again he does not want to use Baclofen, since that med can affect the anti seizure med. So he wants to start him on Valium. This was the drug that I do not want Finn on. It's a very strong drug and it makes me nervous.
We have a lot of decisions we need to make in the next few months and I just hope that we will make all the right ones. Finn continues to be his happy, smiley self. He never ceases to amaze me.
Another bit of shocking news happened yesterday. Finn had an appointment with physical medicine. These are the doctors that will be getting him all his adaptive equipment that he needs. The doctor examined Finn and told us that based on what he is seeing in Finn he has a new diagnosis for him. Cerebral Palsy. When he said that, it felt like my heart was ripped out of my chest. Up until this point the only medical diagnosis was developmentally delayed...they didn't know how else to categorize Finn. But this doctor said that based on Finn's motor skills (or lack thereof) that he meets the Cerebral Palsy criteria. This also helps for insurance purposes and helps us get all the adaptive equipment that Finn needs. The doctor also talked about putting Finn on medication for his tone issues. Since Finn's seizures started up again he does not want to use Baclofen, since that med can affect the anti seizure med. So he wants to start him on Valium. This was the drug that I do not want Finn on. It's a very strong drug and it makes me nervous.
We have a lot of decisions we need to make in the next few months and I just hope that we will make all the right ones. Finn continues to be his happy, smiley self. He never ceases to amaze me.
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