Well besides the usual therapies for Lil Bill things have been pretty calm appointment wise the last two weeks.
This week though we did make it to see the neurologist. I was nervous going there, the neurologist appointment is one of the more nerve racking ones for me. But to my surprise not a whole lot happened there. I mean we already know about the two PVLs, the loss of brain tissue on the left side, and the small brain. We also know that Lil Bill is delayed with gross and fine motor skills, and that he is tighter on his right side. While this is concerning to the neurologist, we are in this 'wait and see' period. Lil Bill is about to be one (yay) though adjusted he is only 8 months. They typically do not diagnosis until the child is around two. So the treatment is the same that we have been doing. Physical therapy and occupational therapy weekly, and speech and feeding therapy will start next week! It is a little frustrating being in this wait and see period but at the same time it is nice to know there is hope that he will make great progress before getting a diagnosis.
And yesterday we FINALLY got the hearing aids!! I never thought I would be super excited to get hearing aids for my son but I was. They are unsure that they will help him so we will be following up monthly to track his progress and adjust the settings if needed. So fair the verdict is inconclusive! Some moments I think that he hears, and others I can scream from behind him and he won't even know. I have been testing him with every noise I can think to make, if he can hear me I almost feel bad for him because I have been a little loud and crazy :) But I suppose nothing has changed since that was the case before too. So that is another wait and see thing that we are in. Waiting to see if the hearing aids will help or if he will be a candidate for the cochlear implants.
Of course tonight we heard one of his hearing aids clicking. We couldn't find anything about it in the manual so we will have to call tomorrow. Technology is a blessing and a frustration all in one.
Tomorrow we will also finally be getting the C PAP machine. Lil Bill will need to wear it for naps and overnight sleeping. It is hard trying to ad two different things into our routine in one week, the hearing aids and the CPAP but I know we will adjust. I will update to see if it helps any within the next couple days.
Also we got the OK from G.I. today to switch his feeds again! I was so happy we are getting back to our 'normal' feeding schedule. He can now get ng tube fed 6 ounces in 1 hour, 5 times a day. We can still feed him by mouth during his off times of feeding but they do not want us to subtract what we are feeding him by mouth from his tube feedings yet. I see this being a problem but I will wait and see before I question them. The goal is to not need the tube anymore and if Lil bill if getting fed that much through his tube I am worried he will not be hungry enough to even try to feed by mouth. We will see how that plays out!
Wednesday, August 28, 2013
Saturday, August 10, 2013
And then there is days like today...
Today has been a mentally draining day. Nothing completely crazy happened. I feel like sometimes issues with Lil Bill happen so quick and I do not have time to process any of them before the next when pops up. So I guess you could say today was a processing day. Emotionally and mentally draining!
A lot happened this past week. We had physical therapy and occupational therapy like we do every week. Lil Bill has been really showing some progress. His therapists have been really pleased with his head control. He still can not control it completely but his progress is obvious. He also has finally figured out more about his hands, he enjoys punches toys with them and sometimes grabbing. It was a good week as far as the therapies go.
We had a follow up meeting with our child development worker, the Brandywine School District, and statewide services for the deaf and hard of hearing. We came up with a new Individualized Family Service Plan (IFSP) for Lil Bill. They handed us papers about Special Education, which hits me with a blow. But I try to keep an open mind that everything they are doing is to help Lil Bill reach his full potential, which as parents me and Billy completely support and want so if it is what is going to help him for now, then it is what it is. So to get the services from the statewide services of the deaf and hard of hearing we have to enroll Lil Bill in the school district. Not even 1 year old and already getting enrolled in school, what the heck!?
We also saw the pulmonologist this past week. We discussed Lil Bill's sleep study and his results show severe sleep apnea. So what does this mean? It shows that he consistently stops breathing during his sleep, I think the total times an hour were 24.1. From my understanding for them to intervene with C PAP the total times have to be over 24. That is just our luck huh, to be over by .1! They are not long periods, and his stats stay up which is great. So we are trading in our oxygen concentrator and oxygen tanks for a CPAP machine! I guess that's good news and bad news, we can get rid of some of our equipment while adding something new. Which seems to be the way Lil Bill likes to do things. As soon as he gets through needing some kind of support another one pops up that he needs, I used to joke that we would be OK unless it all started happening at once. Thankfully it has not all started happening at once yet.
So we do not know if he will out grow this or not. Both ENT and his pulmonologist both said that the only other way to help him right now would be putting him on a trach. But they also said he is not at the point that they would even consider it at all, so that is good news. So hopefully the C PAP will be coming this week and we have to get another sleep study in a month or so to make sure the C PAP is doing its job.
We saw a new G.I. doctor as well this week. We go to them for Lil Bill's re flux, constipation, and they are now making decisions with his feeding tube. We were really hoping to get off continuous feeds. The 18 hour continuous feeds are very difficult for everyone involved. I feel like since they started I have lived my life in 18 hour increments and 6 hour increments. That is just how my days get planned out in my mind. Well unfortunately we did not get off that schedule, but fortunately we did get to pull the NJ tube out and put in in a NG tube, which really is a huge step! So in a couple days if Lil Bill is tolerating his feeds we can switch it to two 7 hour feeds, then keep weaning til we get to bolus feeds (or every three hours). It has been three days now since we started using the NG tube again and he is doing great with it! We can still feed him the purees and bottles by mouth when he is awake and alert and not being fed through the tube. He is still loving them!
We also got the O.K. to let him taste some cake on his birthday! I was really happy. It was actually one of the first things I thought about when they initially put him on the feeding tube. As silly as it may sound. I just feel as though the normalcy of baby hood as been robbed from us and Lil Bill, and I have been to so many birthdays for 1 year olds with cake all over their faces and I was sad that that may be something else we may miss out on. But NOPE! He can taste some. Now I will have to really get to planning his first birthday! It has really crept up on us. We always have so much stuff going on that I kind of even haven't gotten around to planning much of his birthday, that's so bad huh? But the next two weeks as of right now we only have two appointments each week which will give me plenty of time to plan! 8/31 will be here before I know it.
So today Lil Bill pulled out his NG tube, I had to retape it twice, I can not wait til it is completely gone! He also kinda scared me today. He has laryngomalacia and tracheomalacia, they are airway issues, so sometimes when he cries he stops breathing, his larynx basically collapses on his airway. It usually only lasts a couple seconds. Today it happened twice, and it lasted almost 30 seconds each time. He started crying when I took the bottle away from him and it is like he just froze while crying and stopped breathing and started turning purple. Wow it just hit me that I started this post saying nothing too crazy happened today. See what I mean about losing the normalcy of baby hood! When my baby turns purple it isn't a big deal! Its just all about our 'new normal.' Glad I am able to share some of our 'new normal' life with you!
Our boy is a little trooper, and so are we, and so are our families that help us out so much! People often ask me how I get by. I do not know the answer to that question, but I do know without both mine and Billy's family helping us out and supporting us, as well as some close friends, we wouldn't be getting by as gracefully! (wait are yoga pants considered graceful cause thats all I wear? ;))
A lot happened this past week. We had physical therapy and occupational therapy like we do every week. Lil Bill has been really showing some progress. His therapists have been really pleased with his head control. He still can not control it completely but his progress is obvious. He also has finally figured out more about his hands, he enjoys punches toys with them and sometimes grabbing. It was a good week as far as the therapies go.
We had a follow up meeting with our child development worker, the Brandywine School District, and statewide services for the deaf and hard of hearing. We came up with a new Individualized Family Service Plan (IFSP) for Lil Bill. They handed us papers about Special Education, which hits me with a blow. But I try to keep an open mind that everything they are doing is to help Lil Bill reach his full potential, which as parents me and Billy completely support and want so if it is what is going to help him for now, then it is what it is. So to get the services from the statewide services of the deaf and hard of hearing we have to enroll Lil Bill in the school district. Not even 1 year old and already getting enrolled in school, what the heck!?
We also saw the pulmonologist this past week. We discussed Lil Bill's sleep study and his results show severe sleep apnea. So what does this mean? It shows that he consistently stops breathing during his sleep, I think the total times an hour were 24.1. From my understanding for them to intervene with C PAP the total times have to be over 24. That is just our luck huh, to be over by .1! They are not long periods, and his stats stay up which is great. So we are trading in our oxygen concentrator and oxygen tanks for a CPAP machine! I guess that's good news and bad news, we can get rid of some of our equipment while adding something new. Which seems to be the way Lil Bill likes to do things. As soon as he gets through needing some kind of support another one pops up that he needs, I used to joke that we would be OK unless it all started happening at once. Thankfully it has not all started happening at once yet.
So we do not know if he will out grow this or not. Both ENT and his pulmonologist both said that the only other way to help him right now would be putting him on a trach. But they also said he is not at the point that they would even consider it at all, so that is good news. So hopefully the C PAP will be coming this week and we have to get another sleep study in a month or so to make sure the C PAP is doing its job.
We saw a new G.I. doctor as well this week. We go to them for Lil Bill's re flux, constipation, and they are now making decisions with his feeding tube. We were really hoping to get off continuous feeds. The 18 hour continuous feeds are very difficult for everyone involved. I feel like since they started I have lived my life in 18 hour increments and 6 hour increments. That is just how my days get planned out in my mind. Well unfortunately we did not get off that schedule, but fortunately we did get to pull the NJ tube out and put in in a NG tube, which really is a huge step! So in a couple days if Lil Bill is tolerating his feeds we can switch it to two 7 hour feeds, then keep weaning til we get to bolus feeds (or every three hours). It has been three days now since we started using the NG tube again and he is doing great with it! We can still feed him the purees and bottles by mouth when he is awake and alert and not being fed through the tube. He is still loving them!
We also got the O.K. to let him taste some cake on his birthday! I was really happy. It was actually one of the first things I thought about when they initially put him on the feeding tube. As silly as it may sound. I just feel as though the normalcy of baby hood as been robbed from us and Lil Bill, and I have been to so many birthdays for 1 year olds with cake all over their faces and I was sad that that may be something else we may miss out on. But NOPE! He can taste some. Now I will have to really get to planning his first birthday! It has really crept up on us. We always have so much stuff going on that I kind of even haven't gotten around to planning much of his birthday, that's so bad huh? But the next two weeks as of right now we only have two appointments each week which will give me plenty of time to plan! 8/31 will be here before I know it.
So today Lil Bill pulled out his NG tube, I had to retape it twice, I can not wait til it is completely gone! He also kinda scared me today. He has laryngomalacia and tracheomalacia, they are airway issues, so sometimes when he cries he stops breathing, his larynx basically collapses on his airway. It usually only lasts a couple seconds. Today it happened twice, and it lasted almost 30 seconds each time. He started crying when I took the bottle away from him and it is like he just froze while crying and stopped breathing and started turning purple. Wow it just hit me that I started this post saying nothing too crazy happened today. See what I mean about losing the normalcy of baby hood! When my baby turns purple it isn't a big deal! Its just all about our 'new normal.' Glad I am able to share some of our 'new normal' life with you!
Our boy is a little trooper, and so are we, and so are our families that help us out so much! People often ask me how I get by. I do not know the answer to that question, but I do know without both mine and Billy's family helping us out and supporting us, as well as some close friends, we wouldn't be getting by as gracefully! (wait are yoga pants considered graceful cause thats all I wear? ;))
Sunday, August 4, 2013
Busy bee, Busy Bill
We are unwinding from a fun weekend with friends and family. We plan on relaxing rest of the night tonight, well I do I hope Lil Bill has the same plans. I feel like I have to mentally prepare myself for the busy week we are going to have. We have multiple appointments every week but this week we have more than our usual amount.
Every Monday we have physical therapy and every Tuesday we have occupational therapy, so every week they are given appointments. The past week Lil Bill has been doing so well with tummy time, I took lots of pictures to show them. Both his therapists are a great support for us. Here is one of the pictures, he is getting so much better at tummy time and he loves it, he gets excited and laughs during it.
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This week also on Tuesday we have a meeting with our child development case worker, statewide services for the deaf and hard of hearing, and the school district. Our child development case worker is through the state's early intervention program. Every state has one by law, to make sure that any child that qualifies for services can receive what they need. We receive our physical therapy through them, our occupational therapy through them, and hopefully soon will be receiving speech and feeding therapy through them. Their program as well as A.I. and CHOP has waiting lists for both feeding and speech. It is frustrating that Lil Bill can't get the services he needs but also sad that so many children need them. We also see our neurologist through the Child Development program. So they really do a lot for children with delays, I am very grateful for them.
After hearing about Lil Bill's hearing loss and hearing disorder, auditory neuropathy spectrum disorder (I will get around to explaining what this means later I promise), our case worker wanted to get us acquainted with additional services that will help Lil Bill. We all met at A.I. hospital a couple weeks ago when we were impatient but we are meeting again to come up with a more updated Individualized Family Service Plan.
Wednesday we are going to the Pulmonologist I am sure we will know after that appointment what we are going to do about Lil Bill's sleep apnea. Since his pulmonologist is the one who put him on the NJ tube I am hoping he will give us guidance on when to move it back to an NG tube, and if not we see a new GI doctor Thursday. So I am sure by the end of the week at least we will know what is going to happen with the tube. The 18 hour continuous feeds are very hard on all of us, Lil Bill included so I am hoping we can change that schedule. Plus now that he is able to eat by mouth, its hard to find times to try because of his feeding schedule. Lately we have been doing two bottles and one puree during his 6 hour feeding break. He has been doing so well!! Especially with the purees.
I tried making a home made avocado puree for him, he was not a fan at all. So we tried an apple puree, which he loved, and a prune puree which to my surprised he loved so much! He got so upset when we were done eating, as you can see here.
I will be sure to update what happens with all these appointments! OH BY THE WAY, we are getting hearing aids August 27th! Just in time for Lil Bill's first birthday on August 31st! What better gift for a birthday than possibly being able to hear more??
Every Monday we have physical therapy and every Tuesday we have occupational therapy, so every week they are given appointments. The past week Lil Bill has been doing so well with tummy time, I took lots of pictures to show them. Both his therapists are a great support for us. Here is one of the pictures, he is getting so much better at tummy time and he loves it, he gets excited and laughs during it.
This week also on Tuesday we have a meeting with our child development case worker, statewide services for the deaf and hard of hearing, and the school district. Our child development case worker is through the state's early intervention program. Every state has one by law, to make sure that any child that qualifies for services can receive what they need. We receive our physical therapy through them, our occupational therapy through them, and hopefully soon will be receiving speech and feeding therapy through them. Their program as well as A.I. and CHOP has waiting lists for both feeding and speech. It is frustrating that Lil Bill can't get the services he needs but also sad that so many children need them. We also see our neurologist through the Child Development program. So they really do a lot for children with delays, I am very grateful for them.
After hearing about Lil Bill's hearing loss and hearing disorder, auditory neuropathy spectrum disorder (I will get around to explaining what this means later I promise), our case worker wanted to get us acquainted with additional services that will help Lil Bill. We all met at A.I. hospital a couple weeks ago when we were impatient but we are meeting again to come up with a more updated Individualized Family Service Plan.
Wednesday we are going to the Pulmonologist I am sure we will know after that appointment what we are going to do about Lil Bill's sleep apnea. Since his pulmonologist is the one who put him on the NJ tube I am hoping he will give us guidance on when to move it back to an NG tube, and if not we see a new GI doctor Thursday. So I am sure by the end of the week at least we will know what is going to happen with the tube. The 18 hour continuous feeds are very hard on all of us, Lil Bill included so I am hoping we can change that schedule. Plus now that he is able to eat by mouth, its hard to find times to try because of his feeding schedule. Lately we have been doing two bottles and one puree during his 6 hour feeding break. He has been doing so well!! Especially with the purees.
I tried making a home made avocado puree for him, he was not a fan at all. So we tried an apple puree, which he loved, and a prune puree which to my surprised he loved so much! He got so upset when we were done eating, as you can see here.
I will be sure to update what happens with all these appointments! OH BY THE WAY, we are getting hearing aids August 27th! Just in time for Lil Bill's first birthday on August 31st! What better gift for a birthday than possibly being able to hear more??
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