Update to Our State of Mind

Gili's first Walker - August 21, 2012

Two years ago today, I made a list of things I wonder about. Now I have some answers.

- Will Gili be able to be in a regular class when she starts grade school?
No

- Will strangers be able to tell she's "special" from her face? (I don't mean her sparkling blue eyes and infectious smile.)
Yes

- Do CMV babies live as long as other people?
No. See this thread from Facebook. Life expectancy of children with cerebral palsy is greatly dependant on whether or not they walk.

- How often will I be taking her to physical therapy and other types of therapy?
Thank G-d, I know longer have the shlep her around. She gets all her therapy during the school day. When she begins school next week she will have therapy, activities, and love until past 5pm most days. She also is provided transportation to and from school. How far we've come from when I started this blog!

- Will teachers or parents worry about her or my other children being contagious? Should they worry?
It doesn't come up much, but I use it as an opportunity to say, all kids of preschool age should be regarded as conatagious. Wash your hands.
-
 Will she get married and have a normal life? Will potential suiters consider her defective?
It is unlikely that Gili will get married and lead a "normal" life.

- Will she "catch up", we'll forget she ever had CMV, and this blog will be abandoned into the cyberspace abyss?
It doesn't look like that will happen, short of a great miracle. We'll take whatever little miracles we can get. I'm sure there are many miracles that I am unaware of that allowed her to even be born, and more that have allowed us to still have her in our family today.

If you'd like to skip to my first blog posts, check out the "In the beginning..." links in the right hand column.

Life Expectancy and Lungs

I hope it's okay that I'm posting this thread from a private Facebook group. I think this is a question we all want to ask, but don’t want to think about. I mean no disrespect by replacing the beautiful names of each child with “my son.”

 

 

 

HK: I hope this question isn't too hard but we are pretty new with our diagnosis still and learning still.

 

What tends to be the cause of death for cCMV kiddos? In the short time I've been here [a member of this forum] there have been a few deaths and I'm curious if there's something I haven't been told by our docs?

 

Thanks!

 

RL: From what I can see, it's all over the board. Feeding difficulties, seizures, illnesses, bodies just plain shutting down. Sorry, I know that doesn't answer anything. Just remember that everyone is different, and our kids very often surprise us.

 

HK: Thanks RL. I appreciate it! If anyone has any other info I'd be interested in hearing it as well :-)

 

AE: Hi HK, Here's my take on it... and mine is 11yo now so I am definitely no expert. And I guess I look at it some from a nursing perspective. I think with most of the problems our kiddos have, the lungs tend to be the major area of concern for me. I’ve seen the lungs go bad in so many different situations... seizures, swallowing issues, etc. I guess the thing that scares me the most is how quickly their little lungs can go bad. I haven't looked at the stats in a long time, but the number one cause of death in children and adults with disabilities used to be aspiration pneumonia. Not sure what it is now. Nevertheless I am very strict about who feeds my son and I don't tolerate anyone that doesn't take safe feeding seriously. I am also vigilant about making sure I keep him up and moving, swimming, bike riding, whatever it takes to make sure his lungs don't get weak.

 

HK: That's helpful AE. Your explanation really helps bring what our doc said to something more meaningful. When we asked about prognosis, etc, he said it would depend on mobility and any other secondary issues. I hadn't connected all the dots in my mind until your explanation, so thank you.

 

We struggle with feeding issues. My son is g-tube dependent. He is now 9 months old and doesn't take any liquids by mouth, not for lack of trying on our part, but because little man can't figure it out. He had a severe bout of RSV back at 6 weeks old as well and has been having repeated upper respiratory problems recently. I've heard that the RSV alone can take a toll on the lungs in a healthy child, so I'm getting nervous about this winter and how he will do.

 

AE: Don't get nervous HK... I tried it for a while and it doesn't help at all. Just think about it like this... The lungs are meant to be upright for the larger part of the day. Even if your son is not very mobile (you won't really know until he does or doesn't meet milestones), there are lots of ways to keep him moving, even if it just means carrying him upright. We were blessed in that our son was able to hold his head up fairly well by the time he was a couple years old so we started putting him in a walker (just a regular baby walker) which kept him upright, forced him to gain trunk control, and also put pressure on his legs which is very important for normal leg length and strength. We also scheduled MBS studies so that I could be the one feeding him and tried many different positions to see which was least risky for swallowing issues or aspiration. For many years, a reclining position worked the best for him and we kept our study results close by because every nurse you will ever meet will insist that children must sit up in order to swallow safely... don't ever, ever let someone that doesn't understand your child's individual needs dictate the care he gets. You know your child best and don't let anyone ever tell you any differently. Safe feeding can only be determined by MBS done with you in the driver’s seat. Another thing that I want to say to you is this (with reference to winter). Cold weather has never ever been the cause of an infection. Infection is caused by bacteria, virus, or other type of bug. Now with that being said... the weather can make a difference in whether or not a bug can survive. Heat and humidity makes for a much better growth medium for bugs. Embrace the cold winter months... Check out the statistics.... people from northern colder states actually live longer than those nuts like me who hang out with mosquitoes and snakes and such. My best advice for you though is to cherish every moment and have fun with your son. I spent several years waiting for the shoe to drop and at some point I realized I was wasting precious time and just made myself start doing "fun stuff" instead. I know I will one day lose him, but I'm determined to make the very most of the time we have, no matter how long that might be. He is my joy and I truly believe that God sent him to me because I was exactly what he needed and he was exactly what I needed. We are a team. Others may not understand us, but we understand each other and that is what matters most.

 

HK: That was beautiful :-)

 

DB: Hi HK, I asked Dr. Stuart Adler, a pediatric CMV expert, this question. He told me that CMV per se does not lower life expectancy; it is the resulting conditions that would affect that. So, a child with cerebral palsy, or respiratory issues, or whatever other health issues, would be subject to the risks associated with those specific conditions. I hope that helps!

 

HK: Thanks DB, it does help!

 

LM: Hi HK. My son passed away in 2010 because of respiratory failure. As he got bigger, he could no longer cope with the demands of his body because of the severe neurological damage. I am also sure that his epilepsy had an impact. Winters were also scary times for us. The trick, and it is one of the lessons we learnt, is don’t think too far ahead, especially in the early days as it can seem so daunting. Take it day by day and things will "normalize" in the sense that you will become more used to dealing with your special man’s needs. As I am sure he is already doing, he will surprise you in so many ways and bring you joy in ways you never thought. Don’t get too scared about what has happened with other kids, each are unique. Always here to chat, Lots of love xxxx

 

HK: Thank you LM! I am sorry to hear about your sons passing. I look at my son when he is not fighting off any of the infections or viruses and he seems so healthy; but when he gets sick, he gets it so much harder than his sisters. He has had a month of back to back illnesses now and woke up wheezing this morning similar to when he had RSV and we almost lost him. It sure is hard to try to lead as normal a life as possible but balance that with trying to keep little man healthy.

 

Appreciate your sharing! Thanks!

 

Autism Ambivalence

Gili's 'diagnosis' of autism hasn't really changed anything, but my husband and I do think about it once in a while. It really hit me when I saw it on the Neurologists's report. It was one of the few things I could read.

My husband said, "I thought Gili couldn't be autistic because she's special needs." That's what I thought, too. I thought you had to be higher functioning to fall within the autism spectrum. I still don't think Gili has autism. The neurologist just said that her behavior, like the repetitive motions she makes slapping the floor and repeating the same sound like, "d'ge, d'ge, d'ge," are consistent with autism specrum disorder.

I've taken this opportunity to join a couple of the many autism groups/forums. I figure some extra advice can't hurt. Though I still feel like I get the best advice from the other CMV moms. I think the main difference is that Gili has no concept of right and wrong and therefore she can't "misbehave."

Yesterday Big Sis asked my husband why he loves Gili the most. I don't think he came close to denying it, he was just somehow surprised that she noticed. I joke that Gili has the best father in the world... even better than her brothers and sister.  He answered that he loves everyone the same. But to me, he answered that it's because she's the best behaved. He's blind the the things that would be horrific if "normal" two year olds did them. It's not likes she's an angel, she just doesn't know better, so he can't get mad at her. It made me think about how we get stressed out about our other kids misbehaving, ignoring us, etc. Really they are no worse than other kids their age. They can be monsters at home, but I am grateful that I can usually trust them to behave for others, teachers, other parents. There are pre-teens and teens who actually come play with them for free. So thank G-d, they are basically sweet kids.

I think that my husband give Gili the most love to compensate for the attention she doesn't get from others. Big Sis is obsessed with Lil Bro and only wants to play with him "because he's so cute." She rarely even touches Gili. And babysitters, even with the best intentions, are a little stumped on what to do with her. "So, what does she like to do?" Even now, I'm home juggling two little ones, it's little Bro who's sleeping (with a fever) on my chest, while Gili is kicking the door behind me in need of attention. As much as I wish my husband would be more attentive to the needs of our infant, it's good that Gili has an advocate. It's a shame we can't just be on the same team, but I naturally put the needs on my helpless nursling first. So it's good that hubby makes sure Gili gets what she needs, even if she's not the "squeekiest wheel" in the house.

Gross Motor Function Classification System for cerebral palsy (GMFCS)

Tracy McGinnis of the Brendan B. McGinnis Congenital CMV Foundation posted this GMFCS PDF link to our CMV Mommies group on Facebook. It describes how they classify the severety of Cerebral Palsy, at least in the US. Check it out!

I think Gili would be classified as lavel 3, but she might reach into the level 2 category.

LEVEL III: Children maintain floor sitting often by "W-sitting" (sitting between flexed and internally rotated hips and knees) and may require adult assistance to assume sitting. Children creep on their stomach or crawl on hands and knees (often without reciprocal leg movements) as their primary methods of self-mobility. Children may pull to stand on a stable surface and cruise short distances.
Children may walk short distances indoors using a hand-held mobility device (walker) and adult assistance for steering and turning. 

The Race is On

Last week Gili started pulling up to a standing position all on her own. Now she is really getting around. Lil Bro started pulling up to a stand yesterday. Now the race is on to see who will walk first!

I had sort of thought once Gili got her AFOs she'd take off. It seems quite the opposite has happened. To begin with, she doesn't seem to like the AFOs very much. I suspect they make it harder for her to stand. I think a lot of what my husband thinks is strength is really stiffness related to her cerebral palsy. In order to put on the AFOs, Gili's foot must be flexed more that 90 degrees. The lady who fit her AFO's explained to me that bending her knee with help her ankle bend. It's called total flexion. The opposite, which is her usual standing position, is total extension, with the leg straight and the toe pointed. I think that the AFOs cause her foot to flex, which releases the hypertension in her legs, which usually helps her (or forces her) to stand. So that's my theory.

I also can't find any snug, smooth, long  socks to fit with the AFOs. I'm planning to order AFO Interface Ankle Compression Socks.

Just a couple other things I've been meaning to mention:


Please do not repost this image

At Gili's appointment with the new neurologist, he asked about her microcephaly. I said that some doctors said Gili had borderline microcephaly. He measured her head and said she was so many (don't remember the exact number) standard deviations from the mean, and by looking at her it's obvious that she has microcephaly. My husband and I gave each other a slightly bewildered look to say, "Her head is obviously too small?"

Gili also has pectus excavatum. Have I mentioned that before? I took some pictures of my little ones having fun in the bath, so I thought I'd share a picture to show her chest. I think at this point we've decided not to see a specialist and open up a whole 'nother can of worms. Though, personally I'd like to know if it's affecting her breathing or anything else. Usually it's just cosmetic, but hers is pretty severe. The doctor we would see about it is a surgeon, so my husband said, "no way." I just thought I'd let you see what it looks like.

If you look closely at the picture, you can also see the redness on Gili's cheeks. Her cheeks, chin, and the top of her nose are extremely chafed, dry, red, and calloused. I think it's a combination of drool and scratching herself when she chews her hands... another problem on it's own.

Speaking of chewing... I set up an Amazon Carousel to feature some things we like. Except for the iPad and LeapPad items, I own and love all those things. We especially can't live without the Graco Electric Nasal Aspirator and Massaging Teether.