[krystal]

My daughter is 2.5yrs old and we aren’t planning to take her back to daycare anytime soon. As much as we enjoy her learning social skills from other kids her age, I don’t think it’s worth the risk right now.

[krystal]

My daughter dosed with commercial Zolgensma earlier this week. The process was simple for us, but I think it was due to the road that was paved from other families that fought hard for coverage.

[krystal]

I enjoyed this post. It gives me a lot of hope for my daughter in that there will definitely be things that she will be able to enjoy, “just like any other kid.”

[krystal]

I agree with this post. It’s hard. SMA sucks, despite the great treatments out there. No matter what, my child still has SMA, and will forever have it. We have been told over and over, “If you don’t use it, you lose it,” and I feel like this is correct even with treatment. Because of this phrase, it’s been hard trying to balance letting my child be a baby, and ensuring she gets what she needs for the day in regards to exercises, appropriate rest, and adequate nutrition. My husband and I both work full-time jobs and we do not work from home, so that adds on to the stress of trying to find someone who can care for my daughter appropriately.

Not to mention I also have a newborn in addition to all this… I’m so tired haha!!

[krystal]

How did you get aides for school? I would like to enroll my daughter into an early start program when she turns 3 (assuming that this is an option for her), and I wonder how to get an aide to help her with the physical disabilities. I have heard of some families having a hard time convincing the school that their child is not mentally disabled and did not want them to be in a special needs classroom. I have also heard that since my child is only physically disabled, she will probably be placed in a regular classroom with the other “normal” kiddos. I have time to think and plan about this, as I will be tackling this issue in the next year or so, and would like to know if anything should be done sooner rather than later.

[krystal]

Thanks for sharing this post. I am somewhat in this situation. My daughter is 19-months-old, with Type 2. My son is 7 weeks old, and fortunately, he is a non-carrier. We did not know my daughter had SMA until during my second pregnancy. I had always thought of having 4 children, but my husband wanted only 2. Before my daughter’s diagnosis, he had a change of heart, and had been entertaining the idea of 3 kiddos. With SMA in the picture, it has definitely put a halt in our family size. We are still discussing it, but we are leaning towards trying for a third baby in the far far future. It all depends on where we are at in life. It depends on how demonic both of our babies will become (I mean that in a very loving and nurturing way haha!), and if we feel complete with our two or if we will be complete with three.

[krystal]

I definitely have questions about this. My husband and I plan to move to a bigger home in the near future, and will probably have questions about how to remodel the bathroom. I think ideas I’ve seen from other families that have been helpful are floating sinks and a roll-in shower. I’m assuming having a bath chair or some kind of seating area in the shower would be best? My daughter sits unassisted but will need securement around her waist/chest because she tends to fall over after some time. I don’t think a bath tub is necessary at all, is that right? And I also think due having arm support surrounding the toilet will help my daughter. Any other thoughts? Is a floating toilet beneficial? What can be placed in the bathrooms to act as storage units that can be easily accessed?

[krystal]

I am anxiously waiting to get my 19-month daughter a Permobil Koala. She trialed the Permobil wheelchairs and felt the Koala was the best one for her. We won’t be expecting the chair until fall or even winter of this year, but I am excited for when it arrives so she can become more mobile during long-distances! But when that happens, it will be time to look into getting a larger car to fit her chair! There’s so many to-dos, but I’m excited to help my daughter in any way that I can to give her the equipment she needs to build confidence and independence.

[krystal]

Hello Rachel,

It’s nice to virtually meet you. My daughter is probably one of the few youngest members on this site. She is 19 months old with Type 2. I am honestly here to build relationships with the older SMA population so I can prepare my daughter for the future and learn more about SMA and how it affects daily living. We live in the Dallas suburbs, and I have family in Houston. Exciting to see that your last loading dose will be next week!

[krystal]

I’ll be attending the conference, So I hope to see you all there. 🙂

[krystal]

Hey Emma,

So I do not have SMA, but my 15-month daughter does. I lurk these forums often. I wanted to let you know that although I do not have SMA, lots of women without SMA experience your menstrual symptoms, to the point where it is very life-draining and very difficult to manage daily activities. You can certainly take the pill every day without taking the inactive pills, and it will “get rid” of your period. It does take time for this, though. It takes about 3-8 months of religiously taking the pill to fully adjust. The more “religious” you are in taking your pill at the same time each day, the quicker your body will adjust to the medication. During that time, you can have spotty periods, or you might skip one month but get it the second month. Besides myself, I know of some ladies who will skip periods for YEARS (and go on to have zero problems with fertility when they want to have babies).

I have probably tried 5 different kinds of birth control pills, since I was 18 (10 years ago). I’ve taken ones with high estrogen, ones with low estrogen, and ones with no estrogen. I’ve taken ones that are 21 days active pills and 7 days inactive, and I’ve taken ones where you take 90 days of active pills straight and then take 7 inactive pills to get a cycle every 3 months. I switched to all of these different kinds of pills because my body reacted differently to all of them. Some I liked, some I hated. It may take just one kind of pill to decide that it’s working great for you, or it could take a couple more tries. But you should give it about 3 months for your body to adjust to see if this pill is working for you or not. Also, depending on the pill, your periods could get lighter and you won’t cramp as much…or, it could make your periods worse. I’ve taken a birth control where, all of a sudden, after 3 months of being on it, I would get a heavy cycle that lasted 7 days and it would occur EVERY. OTHER. WEEK. OMG, let me tell you, I DEFINITELY got rid of that pack and got a new one straight away. It all depends on how your body handles the medication, and unfortunately, it means trial and error.

If you want to consider other options, I know ladies who have the birth control implant, which is a thin bar that is inserted into your arm (that no one notices), and you can pretty much “get it and forget it”. It provides a steady dose of progesterone into the body and you don’t need to replace it for 5 years! These ladies say their periods are lighter, less cramps and nausea, and a couple have said they stopped getting a period altogether. And I know a couple of ladies who got the implant, decided they want a baby, so they got the implant removed and in 3-5 months they got pregnant.

Hope this helps!

[krystal]

Welcome Jennifer! I am a lurker on this forum, as I do not have SMA, but my 15-month daughter was diagnosed a few months ago at 12 months old with Type 2. She never walked, or stand. She can only sit up unassisted. I got here to learn about SMA, to learn about how young and older members of this forum live. I think it’s great to have interactions with other newly diagnosed families with babies close to my daughter’s age, but I also think it’s important to interact with those who have SMA and are older, to get a better perspective on SMA. I am learning a lot by lurking and reading, and I will definitely take a lot of these topics to my daughter as she gets older.

[krystal]

I heard it’s becoming standard care for SMA patients to get a sleep study, BUT that depends on if the pulmonologist thinks its appropriate. My 15-month daughter recently saw a pulmonologist, and after assessing her and asking me questions about her sleep, he does not think she needs a sleep study at this time because her chest x-rays are clear and normal, and she appears to breathe fine at rest during the day. However, since he doesn’t know how my daughter sleeps, he does want an overnight pulse ox study to see if she needs some ventilation assistance during night time. While you are asleep, you don’t even realize if you’ve stopped breathing or not (sleep apnea), but if you’ve been diagnosed with sleep apnea, you then start to realize “Oh, THAT’S why I am tired all the time!” So I think being evaluated via pulse ox or sleep study should be something to consider, not to make you get on a BiPap necessarily, but to help provide a baseline and see how you’re doing.

[krystal]

It is a struggle for my 15-month daughter to put on weight. About two weeks ago, she was in the 10th percentile in weight for her age. She just wouldn’t gain anything! She was getting longer, but not losing or gaining, and since my husband and I are trying to get her into an upcoming clinical trial in April, my daughter needed to gain weight (she has to be in the 3rd percentile or greater) or else she would be ineligible by the time the trial opened! She does seem picky, but we still try to give her new foods to try anyway, and the foods she does like happens to fit well with the diet she was placed on. Nothing fancy, just a typical diet for any “normal” baby that has difficulty gaining weight. Just recently we had a follow-up visit and it looks like she gained almost a full pound, so it looks like she’s doing well so far!

[krystal]

Thank you for this post, it is very helpful. My daughter, bless her heart, she loves kids and babies, and is very talkative. She is only 15-months right now, so honestly all she does is blabs away in Gibberish, but hey, she’s not afraid to tell us her feelings and what’s been going on throughout her day. I hope she continues this when she begins forming true words and sentences.

[krystal]

This. Absolutely this post. I just had this conversation recently with my husband. I am currently 30 weeks pregnant with a son, who will not have SMA, and am worried about when this kind of frustration will occur between him and his sister. My husband and I communicate well and we openly express ourselves, and encourage my daughter to do so (and boy, does she TALK!). I would suspect that our boy won’t be too much different, but if he is more on the conservative side, or more quiet, I would still like to encourage him to talk about his feelings with us. This post further helped me to figure out how to handle this situation when it happens. Thank you so much for sharing!

[krystal]

Thanks for posting this, as it will make me take a step back to remind myself that my daughter may not need help with EVERYTHING, and even at her age of 14 months, she WANTS to be more independent. My husband and I helped to make a Bumbo Wheelchair for her this past weekend, and when we placed her into the chair for the first time, she seemed to INSTANTLY know what to do and started to move forward in the wheelchair! She was smiling and laughing because she discovered she could move. It was amazing to watch, and also a little heartbreaking because I realized that even though she is my baby, she will grow up and want independence, just like each and every one of us.

In DeAnn’s thread about overprotective parents, I am still struggling with finding that balance, but I hope to learn more about topics like these so I can be cognizant of my actions when the time comes to get aides for her.

 

[krystal]

My daughter is only 14 months old, so there’s no way for me to know if she thinks my husband and I are being overprotective parents. However, my husband and I have been more protective of her than before she was diagnosed. For example, before we knew she had SMA, we encouraged her to be around kids her age/kids in general as much as possible so she can gain social development. If one of those kids had a runny nose or cold? Cool. Fine. She can build up her immune system with more germ exposure.

Once we found out she had SMA, my husband and I have been struggling with finding that balance of reminding ourselves that she is still a baby and needs to be a baby vs everything else about SMA. We are focused on her exercises, maintaining appropriate nutrition, swallowing reflexes, adequate fluids and sleep, her breathing, her dirty diaper count, and so much more. I DEFINITELY admit to being more protective of her in regards to germs during this season as well, as flu incidents and pneumonia have increased in the area. We kept hearing from healthcare professionals and SMA families that regression kicks in faster when kids get sick because they don’t want to move, or eat, or do anything but sleep and be fussy, and it’s hard for them to get better when they’re not getting in all the things they need.

It’s also ironic I ran into this thread, because for the past couple days, the weather changed from like 70 degrees F to 21 almost overnight. Since then, my daughter developed a runny nose that turned into a stuffy nose this morning with difficult time breathing through her nostrils (her secretions have  remained clear, with clear lungs, no fever, acts normal and happy but rubs her nose often), and my husband texts me this morning: “Let’s give her Pedialyte and a bottle since it’s easy for her to drink out of, and maybe give her guaifenesin, and  lots of milk to keep her nutrition up, and I think we should call the neurologist to see what we could do to help her get better…”

My point is, my husband and I have both been overprotective lately, even overreacting. I think, once we get a better grasp of SMA and how we can make it a part of our lives, then I’m sure we won’t be as crazy haha (in the end we both thought we were being over the top and decided to monitor her and offer lots of water to thin her secretions).

Awesome post!

[krystal]

I give lots of love for your grandmother…and her name is amazing 😉

[krystal]

OF course I read his books! 🙂 It has helped me feel better about my daughter’s future and to remember to laugh and just live life!

[krystal]

Thanks for your post! Perhaps I have a dark personality, but I thought your comment was funny so I didn’t think your humor was “dark” 🙂

 

[krystal]

I agree with you. Everyone, SMA or not, is different, and one diet may not work well for you even though it works well for someone else. Since my daughter is still very young, she is not on any special diet, but we are definitely trying to get her to eat high-calorie foods because she’s starting to get so thin!!

[krystal]

Thank you for this tip of grinding up your meat and using Mayo as a binding agent! I think that’s a great idea and I will definitely utilize this for my 19-month-old Type 2 daughter. We currently give her baby food meat that’s store-bought and she eats it well, but I wanted to find a way to give her meat that my husband and I make. Your idea sounds perfect for her!!

[krystal]

I do not have SMA but I do have a fairly large tattoo on my back that’s colored. If you have any questions about my experience you are welcome to ask! I am sure someone will be able to accommodate you 🙂