Would there be any interest in this? The SN board is pretty dead and I know there are quite a few moms here dealing with similar issues. I just thought it might be nice to have a check in for support, questions, vents, etc.
Just tagging some of you who have mentioned your kid's SNs before:
So how is everyone doing? Struggles and victories?
We are finally able to focus on P's CP diagnosis now that the cranio issue is on hold for awhile. I am kind of struggling with the unknown--he may have significant speech delays/aphasia/apraxia down the road and that is scary. But I also want to try to take things one day at a time.
Good news is that he's really thriving with regular PT and his hand brace. I can tell a big difference already!
I need to find him a neurologist though. We saw one and didn't click and he didn't answer our questions. Blech.
Me too... his are gross and fine motor skill issues. He was also born with some physical deformities although he's had surgeries to correct/improve them.
He goes to a special needs preschool and is flourishing! Certain things are still hard for him but i constantly see improvement! His new teachers all tell me how impressive he is in spite of the limitations he's been given!
I feel like the older A gets the more evident his delays are. I even had someone comment for the first time this weekend about how he's not as active as most babies. That stung.
I'm trying to stay positive and focus on his improvements, but there are constant reminders of how far he still has to go. I would give anything for a crystal ball.
I'm also trying to not freak out over every little thing, but at his 6 month check up his head circumference was 41cm. She even measured it a few times because it's so small. The pedi wasn't concerned even though she knows his history and his neurologist wasn't concerned either. It's less than 10% on the growth chart and I'm worried.
PT is going well. He works his little butt off every day at it. OT is going to be starting soon too. I'm exciting to have another professional working with him. He is so low tone that he still doesn't have good head and neck control. He can't push himself up with his arms on his chest. He still doesn't use his hands much to play with or hold things. I feel like he's never going to crawl.
I know we have a long road ahead of us, and I hate knowing my baby is going to be struggling with things his whole life. I'm sure I just need more time to get used to our new reality, but right now everything just kinda sucks.
Me too... his are gross and fine motor skill issues. He was also born with some physical deformities although he's had surgeries to correct/improve them.
He goes to a special needs preschool and is flourishing! Certain things are still hard for him but i constantly see improvement! His new teachers all tell me how impressive he is in spite of the limitations he's been given!
I'm glad to hear he's doing well in the SN preschool! We are set to switch P when he turns 1.
Sure I'm interested. Signing in with 4yr old twins in ST & OT.
I'm currently at a pediatric sleep clinic for an overnight study to see if DS2 has sleep apnea. I don't think either one of us will get much sleep here but fingers crossed they get enough data to make this useful. DS2 is wired all over his body, on an uncomfy bed in a room that still has the lights on. And I'm in a recliner that must have come from a catalog of the most uncomfortable chairs ever made. My dentist has better chairs than this. Whine.
(hugs) GotWine. I am right there with you, except instead of low tone it's high tone. He is like a little 2 by 4 when it kicks in. I think he is having muscle spasms in the MOTN that are keeping him up too.
My CW friends have babies right around P's age and they're all talking about starting solids and BLW and it kinda stings because I'm like, "uh, we will have to talk to the OT about it."
Post by longtimenopost on Jul 5, 2015 20:39:46 GMT -5
Brie it's hard, but don't borrow trouble. I'm glad P is doing so well in PT!
We're chugging along. A background is that DD was born at 26 weeks and suffered severe bleeding in her brain. She lost most of the right side of her brain and developed hydrocephalus for which she has a shunt implanted. We were told she may never walk, talk, eat on her own, or know who we are and were given the option to remove support. We didn't, but I would never judge someone who made a different choice.
DD has a diagnosis of spastic hemiplegic cerebral palsy. As far as motor skills, I don't like to use the term delayed because that implies she will catch up and the reality is she may not. She has her own timeline and her potential is unknown. She has no real use of her left arm and hand but her left leg is less affected. She started rolling around 10 months, sat up at 18 months, and pulled to stand at 27 months. Her neuro believes she will learn to walk, but right now her primary mode of transportation is scooting around on her bum. Cognitively, she is amazing. At 2.5, she speaks 3-5 word sentences, counts to 20, and knows her colors in both English and Danish.
We definitely have our hard days, but ultimately we feel so very lucky in light of the possibilities we were given.
Post by longtimenopost on Jul 5, 2015 20:43:13 GMT -5
Hugs GotWine. It is harder as they get older, and not just because others their age are doing so much more. Right now DD is a double-dimpled doll but I worry about when she's not as "cute" and I have to, for example, carry her on my back out in a stroller/wheelchair at age 5.
(hugs) GotWine. I am right there with you, except instead of low tone it's high tone. He is like a little 2 by 4 when it kicks in. I think he is having muscle spasms in the MOTN that are keeping him up too.
My CW friends have babies right around P's age and they're all talking about starting solids and BLW and it kinda stings because I'm like, "uh, we will have to talk to the OT about it."
Ugh, muscle spasms sound miserable for the poor little guy. I know they can be quite painful. It's so hard when they can't talk to you and tell you what's going on.
I hear you with the starting solids too. A isn't ready for solids and wont be for another month or two. I can't keep up with him with the bfing so I might talk to the pediatrician and see what she suggests. I let him suck on apples an carrots for sensory stimulation for now. The sensory stimulation was one of the things that EI said for us to do for cognitive development.
I'm sure you can relate to this, but it's still seems surreal when I say the words " he had a stroke" to people. I feel like I'm in someone else's body, telling their story. It almost catches me off guard when I say it aloud.
I could write a novel, he just has so much going on!
Overall, he is doing good. He is completely off of oxygen and weaning off of one of his meds. The goal is to take him off his blood pressure med in the next few months, so that he would be completely med free! He had an ear tube put in a few weeks ago and is doing fine with it. They did think he has some mild hearing loss in one ear, so they will keep an eye on that.
Like GotWine said, as he gets older, his delays/low tone are becoming more noticeable. He is a really good sitter and he rolls, but he isn't using his arms to support himself at all. He has a PT and OT through Birth to Three, but because he had been on track, they have not been doing much. In my opinion, they should be trying to help him advance, especially since we are starting to notice some delays, but it seems like a fight to get them to come. Plus, we pay $100 per month for it, so I would like to something out of it!
Tomorrow, we are going through a developmental clinic at his heart surgeon's office. The meet with all the cardiac patients every 6 months, until they are 3, to evaluate development in OT, PT, and ST. I met with this team right after his heart surgery and they are fantastic. I am going to get their recommendations on how often he should be meeting with Birth to Three, with hopes that I can get his local team to see him more frequently.
He still struggles with food, although looking at him, you wouldn't be able to tell he is FTT (chunky baby!). He eats almost exclusively eats through his feeding tube. He will take tastes of solids, but still nothing measurable. He did take a few sips of water through a sippy cup and swallowed, so yay for some progress! I swear, with the amount off applause he gets every time he swallows food, you would think he won an Olympic medal! We do have an appointment in a few weeks to get his g-tube button. Right now, he has a long plastic tube sticking out of his stomach, that we have had to keep sticking up at a 90 degree angle for 3 months. The button will be so much smaller and easier to deal with.
In addition to DS, he has Dandy Walker syndrome, which is basically a hole in the cerebellum. It can cause motor delays, as well as a slew of other issues, or it can have no impact. I hate not knowing. Irritability can be a symptom, due to increased pressure in the brain. He has been more cranky lately, which could be teething, but in the back of my mind, I am always thinking that it has something to do with this.
Hugs GotWine. It is harder as they get older, and not just because others their age are doing so much more. Right now DD is a double-dimpled doll but I worry about when she's not as "cute" and I have to, for example, carry her on my back out in a stroller/wheelchair at age 5.
I've been thinking about that a lot lately too. He's going to be wearing glasses and/or an eye patch in August. He will also likely need a hand and/or foot brace down the road. He has micrognathia which is a recessed jaw. Right now everyone comments on how beautiful he is, and how cute his eyes are. I'm worried what it's going to be like when he is no longer a baby. He had a stroke in utero and we wont know the full effects of the damage until he older. He has hemiparesis on the left side, and I don't know what that will mean for his future development yet.
It sounds like your little girl is quite the trooper and has gone through a lot in her short life. It's just not fair.
I could write a novel, he just has so much going on!
Overall, he is doing good. He is completely off of oxygen and weaning off of one of his meds. The goal is to take him off his blood pressure med in the next few months, so that he would be completely med free! He had an ear tube put in a few weeks ago and is doing fine with it. They did think he has some mild hearing loss in one ear, so they will keep an eye on that.
Like GotWine said, as he gets older, his delays/low tone are becoming more noticeable. He is a really good sitter and he rolls, but he isn't using his arms to support himself at all. He has a PT and OT through Birth to Three, but because he had been on track, they have not been doing much. In my opinion, they should be trying to help him advance, especially since we are starting to notice some delays, but it seems like a fight to get them to come. Plus, we pay $100 per month for it, so I would like to something out of it!
Tomorrow, we are going through a developmental clinic at his heart surgeon's office. The meet with all the cardiac patients every 6 months, until they are 3, to evaluate development in OT, PT, and ST. I met with this team right after his heart surgery and they are fantastic. I am going to get their recommendations on how often he should be meeting with Birth to Three, with hopes that I can get his local team to see him more frequently.
He still struggles with food, although looking at him, you wouldn't be able to tell he is FTT (chunky baby!). He eats almost exclusively eats through his feeding tube. He will take tastes of solids, but still nothing measurable. He did take a few sips of water through a sippy cup and swallowed, so yay for some progress! I swear, with the amount off applause he gets every time he swallows food, you would think he won an Olympic medal! We do have an appointment in a few weeks to get his g-tube button. Right now, he has a long plastic tube sticking out of his stomach, that we have had to keep sticking up at a 90 degree angle for 3 months. The button will be so much smaller and easier to deal with.
In addition to DS, he has Dandy Walker syndrome, which is basically a hole in the cerebellum. It can cause motor delays, as well as a slew of other issues, or it can have no impact. I hate not knowing. Irritability can be a symptom, due to increased pressure in the brain. He has been more cranky lately, which could be teething, but in the back of my mind, I am always thinking that it has something to do with this.
So, it turns out that I did write a novel, lol!
This is big for me too. I feel like every little thing that I notice, I'm analyzing it and trying to decide if it's just typical baby stuff or if it's related to the damage from his stroke. I naturally go straight to stroke and get myself all anxious.
Hugs GotWine. It is harder as they get older, and not just because others their age are doing so much more. Right now DD is a double-dimpled doll but I worry about when she's not as "cute" and I have to, for example, carry her on my back out in a stroller/wheelchair at age 5.
I've been thinking about that a lot lately too. He's going to be wearing glasses and/or an eye patch in August. He will also likely need a hand and/or foot brace down the road. He has micrognathia which is a recessed jaw. Right now everyone comments on how beautiful he is, and how cute his eyes are. I'm worried what it's going to be like when he is no longer a baby. He had a stroke in utero and we wont know the full effects of the damage until he older. He has hemiparesis on the left side, and I don't know what that will mean for his future development yet.
It sounds like your little girl is quite the trooper and has gone through a lot in her short life. It's just not fair.
The worst part is the not knowing. I am a planner by nature so I hate that I can't plan for anything that will happen with this.
When P got his McKie brace I put a funny post about it on FB to preempt any questions. So far nobody has commented negatively about it. I guess my coping philosophy is to comment on everything before anyone else can and try to educate as much as possible. He is right hemiplegic with spastic CP, officially.
I've also started a CaringBridge site for some extended family members who want to know more information that is too lengthy for FB. You might want to consider that, you can lock down the privacy if you want.
I've been thinking about that a lot lately too. He's going to be wearing glasses and/or an eye patch in August. He will also likely need a hand and/or foot brace down the road. He has micrognathia which is a recessed jaw. Right now everyone comments on how beautiful he is, and how cute his eyes are. I'm worried what it's going to be like when he is no longer a baby. He had a stroke in utero and we wont know the full effects of the damage until he older. He has hemiparesis on the left side, and I don't know what that will mean for his future development yet.
It sounds like your little girl is quite the trooper and has gone through a lot in her short life. It's just not fair.
The worst part is the not knowing. I am a planner by nature so I hate that I can't plan for anything that will happen with this.
When P got his McKie brace I put a funny post about it on FB to preempt any questions. So far nobody has commented negatively about it. I guess my coping philosophy is to comment on everything before anyone else can and try to educate as much as possible. He is right hemiplegic with spastic CP, officially.
I've also started a CaringBridge site for some extended family members who want to know more information that is too lengthy for FB. You might want to consider that, you can lock down the privacy if you want.
The CaringBridge would be a good idea. I've been trying to be as open and forthcoming as possible. There are a lot of people ( especially older generation family members) that are very concerned and curious. I want to keep everyone in the loop without repeating myself a hundred times. My main reason for sharing as much information as possible is so that other people can share in his successes with us. Also, it's not coming off as weird when I brag about his smaller successes that might not be as big of a deal for other babies. I'm also just a natural over-sharer with social media! It seems like the area in his brain where he had the stroke isn't as common. I can't find anyone who has had a right rolandic stroke. I was thinking of starting a blog ( nothing monetized or anything like that) in case someone else wanted to come out of the woodwork and share their experience of a right rolandic stroke too. A blog or CaringBridge where someone else could find A's story could help us connect to other people in the same situation would be so comforting.
C's doing okay. As some of you know, we were released from the hospital on Friday evening. We went home and put C to bed, then hung out watching TV for a few hours. We woke him up at 9 to give him his pain meds, and he had a 103.5 fever, so we threw the bags (not even unpacked) back into the car and came back to the ER. He was BURNING up, taking really quick shallow breaths, and acting really out of it -- it was terrifying. After a few hours they were able to get his temp down to 99.5, and we were readmitted. With his blood tests and X-rays, the best the doctors can tell is that the fever was due to a recurrence of his ear infection, and not related to the surgery, which is really good news. They kept us for monitoring for a few extra days. We were hoping to go home today but the doctor wanted to make sure he pooped because his X-rays showed that he was REALLY backed up (from a combination of the tumor, the surgery, the pain meds, and limited mobility). He finally pooped, so hopefully we'll go home tomorrow.
We should have the pathology results back tomorrow or Tuesday, and we'll know what we can expect for treatment. I'm pretty scared about that, but figure I'll wait and worry about that when we get to it.
I'm also nervous about Coin's physical therapy for his gross motor delays. He was supposed to start with his new therapist last Tuesday, but we had to cancel that. Not sure when we're going to be able to re-schedule, and I'm worried that we're losing time here because every day of physical therapy is super-important at this age.
Post by longtimenopost on Jul 5, 2015 21:40:47 GMT -5
We started a FB group when DD was born for family and friends. I update it less and less, but it's been a great way to share updates and photos. So many people have told me how much they appreciate me sharing both good and bad, and even how DD has inspired them.
Post by longtimenopost on Jul 5, 2015 21:43:44 GMT -5
VillainV hugs. The constipation issue is so tough after surgery. I hate having to decide whether or not to give pain meds because I don't want her in pain from the incision but the constipation gives her pain too. Hope you guys can get home soon!
VillainV hugs. The constipation issue is so tough after surgery. I hate having to decide whether or not to give pain meds because I don't want her in pain from the incision but the constipation gives her pain too. Hope you guys can get home soon!
They threw every trick in the book at him (miralax, lactulose, senna, two glycerine suppositories) and STILL needed to do an enema. Poor guy. He's struggled with constipation since we started him on solids at 6 months, partially due to the low mobility from his gross motor delays. He just started actually crawling about 6 weeks ago, and pulling up to a stand maybe 2 weeks ago. So far, other than the two days following surgery when he was hooked up to a zillion tubes, his mobility hasn't really been effected by the surgery, which just amazes me. I guess kids are just really resilient.
Sure I'm interested. Signing in with 4yr old twins in ST & OT.
I'm currently at a pediatric sleep clinic for an overnight study to see if DS2 has sleep apnea. I don't think either one of us will get much sleep here but fingers crossed they get enough data to make this useful. DS2 is wired all over his body, on an uncomfy bed in a room that still has the lights on. And I'm in a recliner that must have come from a catalog of the most uncomfortable chairs ever made. My dentist has better chairs than this. Whine.
Ah, supplier of hospital room guest chairs! My H and I have been sleeping (er, uh, not sleeping, as the case may be) in one of these for the last week. Yep, ONE shitty recliner. And we're not allowed to bring in any sleeping bags, air mattresses, etc because of fire code. I've been sleeping in his crib about half the time, which is nice for the snuggles, but sucks for actually, you know, sleeping
Sure I'm interested. Signing in with 4yr old twins in ST & OT.
I'm currently at a pediatric sleep clinic for an overnight study to see if DS2 has sleep apnea. I don't think either one of us will get much sleep here but fingers crossed they get enough data to make this useful. DS2 is wired all over his body, on an uncomfy bed in a room that still has the lights on. And I'm in a recliner that must have come from a catalog of the most uncomfortable chairs ever made. My dentist has better chairs than this. Whine.
Ah, supplier of hospital room guest chairs! My H and I have been sleeping (er, uh, not sleeping, as the case may be) in one of these for the last week. Yep, ONE shitty recliner. And we're not allowed to bring in any sleeping bags, air mattresses, etc because of fire code. I've been sleeping in his crib about half the time, which is nice for the snuggles, but sucks for actually, you know, sleeping
R is starting to extend her arms for reaching versus always having her hands shoved in her mouth, and has been opening them to try and grasp versus keeping them fisted all the time. She's very shaky when reaching but her face makes it obvious she's very determined. Hoping this is an area we continue to see progress in.
Her head and neck strength has increased exponentially this past month and she can finally hold her head up for a couple minutes while on her belly. She tires out but this is so much different than last month. PT has us working with her to try and push up on her arms now and we do tummy time during every awake period so I'm hoping her strength will also continue to improve. She's not rolling yet but PT is helping us encourage her.
The unknowns really are the worst. Because of how large her ventricles were R is missing a lot of brain mass and just like everyone else, no one can predict what it will/won't lead to. We traveled to Duke in May for her to get a stem cell infusion from her umbilical cord blood, as they have been doing research trials for hydrocephalus and since we knew before she was born, we decided to bank. There's no way to know if it'll have an effect, but we wanted to not regret not doing it.
Our biggest hurdles for the summer will be getting through her sedated MRI 7/17 to check for tumor regrowth and then starting to wean her from her seizure med, both of which feel pretty terrifying. The MRIs have become a fact of life (and will be for a very long time) but the unknown of what they will show is enough to make me cry when I think about it, so I try not to.
So glad to have a group of people to lean on, thanks for setting this up Brie!