We are almost back from Portland and unfortunately it just seems things are continually going downhill... The Neurologist didn't really have any good information for us. Except he has prescribed her another medication to help with her comfort. Other than that it was all bad news. He said we should start seeing a pulmonologist to monitor her lung function because kids with MLD can get chest infections very easily. He also said with her steady decline in speech it's a pretty good indicator the disease is starting to affect the cognitive part (grey matter) of her brain. We were really hoping that it would be further out but what can we do. She is still very happy playing and being engaged she just may not be on the intellectual level we thought she was. We also went to pick up her new orthotics but of course they don't fit because Anabelle is just too stiff. We are going to wait and get them in June when we go in for her botox injections. Hopefully the botox will relax her enough to be able to wear her orthodics and maybe use a stander. Speaking of... We were considering getting her the stander in our last blog but since then we have decided to go with getting a kid kart. It looks like a stroller but is actually a wheelchair. I would attach a picture but I'm blogging from my phone. We as usual are feeling somewhat defeated but I am confident she is recieving excellent care. She has her g-tube consult in a week and I'm very excited about that (never thought I'd be excited for such a thing) but having her tube in will give her and us such a better quality of life. Anabelle is almost 2.5 and I will be calling Make-A-Wish on June 11. I really want to get her MAW done before she loses the chance to enjoy it. Still not sure what we're going to "wish" for but I will keep y'all updated. Also Ronn is working on a fundraiser for Anabelle and the MLD Foundation that will be held on Sept 14th at the Deschutes County Fairgrounds. We are planning on a car show. We don't have a name or any of that just yet but please be praying for a successful outcome. I think that's it for us! Thank you all for your continued support. We couldn't do it without you!!
"I have told you these things, so that in me you may have peace. In this world you will have trouble. But take heart! I have overcome the world." John 16:33
Wednesday, May 29, 2013
Thursday, May 9, 2013
Man, its been a while...
Hello friends :)
I know its been quite a long time since I last blogged. Almost a month! Needless to say I've been extremely busy and very tired. I usually blog after Anabelle has gone to sleep and lately I've been going to sleep shortly there after. A lot has happened in the last month. Let me try to catch you up.
Shortly after Anabelle's official diagnosis we visited Shriner's Hospital in Portland. I don't feel like they did too much more there than we could have gotten done in town but it was nice to see some orthopedic specialists and get an idea of where she is at; also it was free. We talked with them about ordering a bantam stander (pictured below) that will help her digestion, socialization and quality of life. We also had her fitted for some new orthodics that are hopefully going to be much better than the old ones. We also discussed getting botox injections for her legs to help them relax. Quick lesson on botox: when people get it injected into their face they hope to relax their muscles so that their wrinkles don't show. Well much in the same way it can help Anabelle relax her leg muscles. We will be back at Shriner's in the middle of June for her botox eval and injections.
The other good thing that happened while we were in Portland was we got to meet the directors of the MLD Foundation, Dean and Teryn Suhr. They gave us a lot of information on how to move forward, what to get in motion now, and what to expect for the future. I have to say it was quite relaxing to eat dinner with someone who knew that Anabelle's behavior was "normal" and weren't at all bothered by it. They were a very sweet couple and are a great source of wisdom and resources for this process. Through their foundation they have created an email list that I am now a part of with over 250 MLD families and that has really helped me understand this life I'm living and not feel so alone.
After we returned home we started speech/swallow therapy. We started with a clinical evaluation of her swallowing and found out that Anabelle's timing (from her mouth to swallowing) was a little off and it would be a good idea to start her on a mechanically soft diet. Nothing dry, no crackers, and sans anything else she may choke on. Anabelle has really been having trouble eating and I was really starting to get worried. After seeing Anabelle try to eat Teryn insisted that we get the ball rolling on getting Anabelle a g-tube. She will get a g-tube w/ mic-Key button (pictured below). Its a nice little button that they can't really mess with and you just open it up and attach tubing for feeding. The consult for that is the first week in June. We will have the consult here in Bend but she will probably have to have her tube put in at Doernbecher's because they can't put her under with gas anesthesia because it will accelerate the progression of Anabelle's demyelination (disappearing white matter). So we would like them to be able to do it with more of a local anesthesia, which may not be in a comfortable area for the Gastro Doctors here in Bend. It's a big step for us to get to this part of the process but at this point she is hardly eating anymore and having to drink three PediaSures a day just to get enough calories. About a week after the clinical eval we had an x-ray eval done called a modified barium swallow. They had her eat food with barium in it and watched where her food went on the x-ray. Unfortunately the results from that were worse than we thought. To give you a comparison, you and I would cough just as liquid was touching our vocal chords, Anabelle is letting food and liquid fully penetrate her lungs before she coughs. She is getting more particles into her trachea than we initially thought. So now we are having to thicken everything she drinks and also she is on an almost completely pureed diet. It has been hard to see her digress so much but we are taking it one day at a time.
That brings me to today. Well, yesterday. Yesterday Anabelle woke up from her nap at about 2 and was sitting with me when I noticed she started to get really sleepy very suddenly. She was starting to fall asleep in my arms which is very unlike her. I called her doctor to make an appointment and their earliest appointment was 7:30 pm. The nurse on the phone asked me if I had taken her temp and I said no, and she didn't feel like she had one. After I got off the phone with the nurse I checked her temp and it was 101. I gave her some medicine for her fever and again she started to fall asleep in my arms. Suddenly she arches her back, her eyes roll back into her head and her arms are stiff as a board out in front of her just moving back and forth. She was having a seizure, I called Ronn being the smarter medic in the family (and all my medical experience went out the window when it was Anabelle having the issues) and he said just hold tight that he would be home soon but I just couldn't wait. I called 911 and the operator walked me through everything I should do. Anabelle's face started turning blue really fast so she had me lay her on the ground and check her mouth for anything blocking her airway. Next Anabelle spit up a little bit and her color came back to normal. At this point (the seizure lasted about a minute) Anabelle was starting to come down from her seizure but she was unconscious. The cops arrived before the paramedics and started to assess her. First there was a moto cop, then a pair of cop,s then a fire truck and then an ambulance with three paramedics. (I wonder what the neighbors were thinking.) Anabelle was still unconscious as they were giving her oxygen and waiting for her to come to. She was out for about 15 minutes and then they decided to transport her to the hospital by ambulance just in case she had another seizure. Anabelle started to come to just as we got her onto the ambulance. After a little while in the ER, the doctor ordered a flu test, a chest x-ray and a urinalysis. Anabelle came back positive for the flu and RSV. The doctor came in and told me that the flu caused the fever and the fever caused the seizure. Unfortunately with Anabelle's brain condition her seizure threshold is lower. The doctor decided to keep Anabelle overnight for evaluation. They did an EEG after we got up to her room to look at her brain waves and they said that her brain activity didn't show she was seizing during the EEG (they were worried about seizures we couldn't see), but that her brain activity was a little slow and disorganized, which is abnormal for a normal kid but normal for Anabelle (given the MLD). We got home about 3 this afternoon and I am so glad to be home. Anabelle is on some meds to help with the flu and I am closely monitoring her fever. We already had a follow up scheduled with the Neurologist in Portland at the end of May and we will be following up with Anabelle's pediatrician next week.
WHEW!!!! I'm exhausted! Not just from the last couple days but I think it is really starting to hit me how serious this is and I'm getting really frustrated! I watched the neighbor girls (Anabelle's age) today run around the col-de-sac pushing a stroller and talking to each other about all sorts of things and it hurts me to imagine what Anabelle would be like without this stupid disease. I HATE THIS!!!!! I am so frustrated with how awful this disease is! It just makes me so angry I want to scream! I know that God is good and He is faithful but shoot, this really really sucks! And its so hard to know that the best years of her life are behind her not in front of her! ERRRGGHHH!!! Sorry for my little rant but I think I'm starting to hit a wall on this. I am really running out of fuel. Thanks for listening (or reading). As always I will let you know more as I know more.
Alex
Bantam Stander:
G-tube with Mic-Key
I know its been quite a long time since I last blogged. Almost a month! Needless to say I've been extremely busy and very tired. I usually blog after Anabelle has gone to sleep and lately I've been going to sleep shortly there after. A lot has happened in the last month. Let me try to catch you up.
Shortly after Anabelle's official diagnosis we visited Shriner's Hospital in Portland. I don't feel like they did too much more there than we could have gotten done in town but it was nice to see some orthopedic specialists and get an idea of where she is at; also it was free. We talked with them about ordering a bantam stander (pictured below) that will help her digestion, socialization and quality of life. We also had her fitted for some new orthodics that are hopefully going to be much better than the old ones. We also discussed getting botox injections for her legs to help them relax. Quick lesson on botox: when people get it injected into their face they hope to relax their muscles so that their wrinkles don't show. Well much in the same way it can help Anabelle relax her leg muscles. We will be back at Shriner's in the middle of June for her botox eval and injections.
The other good thing that happened while we were in Portland was we got to meet the directors of the MLD Foundation, Dean and Teryn Suhr. They gave us a lot of information on how to move forward, what to get in motion now, and what to expect for the future. I have to say it was quite relaxing to eat dinner with someone who knew that Anabelle's behavior was "normal" and weren't at all bothered by it. They were a very sweet couple and are a great source of wisdom and resources for this process. Through their foundation they have created an email list that I am now a part of with over 250 MLD families and that has really helped me understand this life I'm living and not feel so alone.
After we returned home we started speech/swallow therapy. We started with a clinical evaluation of her swallowing and found out that Anabelle's timing (from her mouth to swallowing) was a little off and it would be a good idea to start her on a mechanically soft diet. Nothing dry, no crackers, and sans anything else she may choke on. Anabelle has really been having trouble eating and I was really starting to get worried. After seeing Anabelle try to eat Teryn insisted that we get the ball rolling on getting Anabelle a g-tube. She will get a g-tube w/ mic-Key button (pictured below). Its a nice little button that they can't really mess with and you just open it up and attach tubing for feeding. The consult for that is the first week in June. We will have the consult here in Bend but she will probably have to have her tube put in at Doernbecher's because they can't put her under with gas anesthesia because it will accelerate the progression of Anabelle's demyelination (disappearing white matter). So we would like them to be able to do it with more of a local anesthesia, which may not be in a comfortable area for the Gastro Doctors here in Bend. It's a big step for us to get to this part of the process but at this point she is hardly eating anymore and having to drink three PediaSures a day just to get enough calories. About a week after the clinical eval we had an x-ray eval done called a modified barium swallow. They had her eat food with barium in it and watched where her food went on the x-ray. Unfortunately the results from that were worse than we thought. To give you a comparison, you and I would cough just as liquid was touching our vocal chords, Anabelle is letting food and liquid fully penetrate her lungs before she coughs. She is getting more particles into her trachea than we initially thought. So now we are having to thicken everything she drinks and also she is on an almost completely pureed diet. It has been hard to see her digress so much but we are taking it one day at a time.
That brings me to today. Well, yesterday. Yesterday Anabelle woke up from her nap at about 2 and was sitting with me when I noticed she started to get really sleepy very suddenly. She was starting to fall asleep in my arms which is very unlike her. I called her doctor to make an appointment and their earliest appointment was 7:30 pm. The nurse on the phone asked me if I had taken her temp and I said no, and she didn't feel like she had one. After I got off the phone with the nurse I checked her temp and it was 101. I gave her some medicine for her fever and again she started to fall asleep in my arms. Suddenly she arches her back, her eyes roll back into her head and her arms are stiff as a board out in front of her just moving back and forth. She was having a seizure, I called Ronn being the smarter medic in the family (and all my medical experience went out the window when it was Anabelle having the issues) and he said just hold tight that he would be home soon but I just couldn't wait. I called 911 and the operator walked me through everything I should do. Anabelle's face started turning blue really fast so she had me lay her on the ground and check her mouth for anything blocking her airway. Next Anabelle spit up a little bit and her color came back to normal. At this point (the seizure lasted about a minute) Anabelle was starting to come down from her seizure but she was unconscious. The cops arrived before the paramedics and started to assess her. First there was a moto cop, then a pair of cop,s then a fire truck and then an ambulance with three paramedics. (I wonder what the neighbors were thinking.) Anabelle was still unconscious as they were giving her oxygen and waiting for her to come to. She was out for about 15 minutes and then they decided to transport her to the hospital by ambulance just in case she had another seizure. Anabelle started to come to just as we got her onto the ambulance. After a little while in the ER, the doctor ordered a flu test, a chest x-ray and a urinalysis. Anabelle came back positive for the flu and RSV. The doctor came in and told me that the flu caused the fever and the fever caused the seizure. Unfortunately with Anabelle's brain condition her seizure threshold is lower. The doctor decided to keep Anabelle overnight for evaluation. They did an EEG after we got up to her room to look at her brain waves and they said that her brain activity didn't show she was seizing during the EEG (they were worried about seizures we couldn't see), but that her brain activity was a little slow and disorganized, which is abnormal for a normal kid but normal for Anabelle (given the MLD). We got home about 3 this afternoon and I am so glad to be home. Anabelle is on some meds to help with the flu and I am closely monitoring her fever. We already had a follow up scheduled with the Neurologist in Portland at the end of May and we will be following up with Anabelle's pediatrician next week.
WHEW!!!! I'm exhausted! Not just from the last couple days but I think it is really starting to hit me how serious this is and I'm getting really frustrated! I watched the neighbor girls (Anabelle's age) today run around the col-de-sac pushing a stroller and talking to each other about all sorts of things and it hurts me to imagine what Anabelle would be like without this stupid disease. I HATE THIS!!!!! I am so frustrated with how awful this disease is! It just makes me so angry I want to scream! I know that God is good and He is faithful but shoot, this really really sucks! And its so hard to know that the best years of her life are behind her not in front of her! ERRRGGHHH!!! Sorry for my little rant but I think I'm starting to hit a wall on this. I am really running out of fuel. Thanks for listening (or reading). As always I will let you know more as I know more.
Alex
Bantam Stander:
G-tube with Mic-Key
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