Crawling on the horizon at 31 months??

Andy was rolling around a lot on his bedroom floor today, and pushed his butt up then moved forward on his elbows. It was so exciting to see. I hope that he will continue this, and believe me there will be plenty of tummy time tomorrow. I'm hoping it isn't something that we aren't going to see again for a while, that has happened way to many times. It would be so great to finally see my son exploring the house.

Stepping up the Omega-3 supplements for Developmental Delays

Andy started out taking the Lil Critter Omega-3 gummy vitamins, and I am still giving them to his sister because we bought such a huge bottle, but the dosage of fish oil is a little low (200mg or so). He's taken them for around 4 weeks now, and I have noticed minor improvements more so than his usual snails pace improvements. So, now we're ready to move up to something more packed with omega-3 (2000 mg). I take a squeeze pack, and put it directly in my mouth, but the taste is a little too "citrusy" for Andy. He doesn't care for orange juice, so I needed to find a food item. I didn't want to mess with his morning oatmeal, because I didn't want him to start disliking it, but it mixed okay in the peach flavored oatmeal. So instead, I've been mixing the oil in a bowl for him with an orange creamsicle. It tastes great, I just smash it all up together, and he eats a whole squeeze pack now, once a day. I started out with a pea size on my finger, and would put it on the roof of his mouth, but he showed me by crying that he didn't like that.

I am seeing a nice developmental progression in Andy, and I am so happy! He will now hold his toothbrush with both hands and actually brush his teeth himself. Lately I will only brush his teeth using a hand over hand method, where his hands MUST be on the toothbrush every time we brush twice a day. I've tried this a few times before, and have given up, but this time maybe with the help of the fish oil, he will hold the brush and help. I can even let go, and he will do it himself. I have to have him sitting on the floor, I think it helps him concentrate the best.

Next, he loves hearing pat-a-cake, and has recently started clapping, but has never clapped along with the song. Now, he claps for me, while I sing. This is just so awesome. And I tell him, "come on you've got to clap while I sing", and he starts clapping. He will also say "yay" and clap at the end.

I really think the fish oil is helping, because I take it daily as well, and it seems to help my memory and cognition.

I've stopped the l-carnitine, just for the time being, because he is still SO immobile. The problem is that it gives him energy, so when he doesn't move around at all, he isn't burning up the energy he already has. So, it backfired on me, and he wouldn't nap for me, he wasn't tired enough. He was also starting to really protest going to bed at night, so I've cut it out for now. However, I will give it to him if I start to see him crawl. He will be able to use the extra energy boost then, but right now he doesn't burn off enough of the energy he already has. I've read about people with CP taking it, and they feel it greatly helps them with their walking and endurance to walk or even jog. So, I'll keep it around for when needed.

We are trying supplements for developmental delays

The last few months, I've been lost again. Down about Andy, and feeling hopeless. He is now 30 months old, and no sitting up yet, or crawling, or pulling to stand. He does roll around. After a lot of prayer, not only for Andy, but for myself, I feel compelled to try supplements for Andy. I've been asking for strength to keep leading Andy in the right direction, and find him the help he needs. PT, OT, I've lost faith. After a year and some change, we've really seen no results. We just have the school therapists visiting right now, I don't feel the "extra" therapy visits done in a private office are benefiting us at all. Just more of the same.

Now on to the supplements. We, as a family, have all started taking fish oil/ omega 3 gummy vitamins. The kids are taking lil' critters omega 3 vitamins. They contain DHA, which the brain loves, so I love it. I also got adult ones for myself and husband. After visiting the Vitamin Shoppe, I am now trying an orange flavored fish oil "squeeze pack", which has 2000mg of fish oil in it. Nearly 300% of what you need. The kids are getting a small amount on top of their gummy vitamins, which only contain around 200mg of fish oil. The squeeze pack can go right into your mouth, or into a small cup of juice, smoothie, or in food.

I am seeing a difference after 2-3 weeks in myself, and in Andy. My memory is very sharp. I've always had a good memory, but now it's real good. No more mom brain, the haze has lifted. With Andy, I'm seeing him progress slightly faster than usual. His usual progression is pretty non-existent. He's been at a 9 month level for a year and a half. Now he's clapping his hands, pointing more, trying to push up on his hands, and just seems more awakened. He gets his omega 3 vitamins every morning after breakfast, they are right on the kitchen counter so that they are easily accessible. He can chew them up on his own, which is a blessing for Andy. They taste like a fruit snack.

I have also pursued L-carnitine supplements. I spoke to Andy's Physical and Rehabilitative doctor about it first. She says it is a common part of the treatment regimen for kids with Mitochondrial disease. But since Andy hasn't officially been diagnosed with anything, besides brain underdevelopment and hypotonia, she didn't suggest it for him. I have discovered that it is also used for kids with autism and ADHD, and has gotten results of a better attention span, increased focus, and reduced hyperactivity. Fragile X kids also get the benefit of reduced aggressive behavior from it. So, what can it hurt to try?

The main reason I want to give it to him is to increase his endurance. Kids with low muscle tone tend to fatigue quickly. I want him to be able to work with me for longer periods of time before getting tired and cranky at home doing PT stuff. I read that too much L-carnitine can cause stomach upset, so I am proceeding with caution and starting out with a low dose.


The L-carnitine is a liquid, also from the Vitamin Shoppe. It is raspberry flavored and tastes really good, like a raspberry freeze pop. I draw up one teaspoon into a medicine dispensing plunger from the drug store and squirt it right into his mouth. The treatment regimen for someone with autism or ADHD is 500 to 1000 mg a day. I am giving Andy 1 teaspoon after lunch, and 1 teaspoon after dinner, or breakfast and dinner. This amounts to about 700 mg a day. The first day, I only gave 350 mg (about one tsp), and watched for stomach upset, but didn't see any. A much higher dose l-carnitine can be purchased, but I started out with the lowest dose one.

I like what I'm seeing with just a few days of L-carnitine. Much more movement, he has more energy to pursue movement. He is more rambunctious, and I can push him further in his gait trainer, and in four point. He is trying harder to sit up from the floor. I think he simply has more energy and endurance. I've been amazed at what I'm seeing with first, three weeks of the omega-3, then introducing the L-carnitine just over the past week. I researched the internet for answers about developmental disabilities and supplements, and found scholarly articles showing positive results from both supplements. It was good enough for me. I am still waiting to see if this supplement will have a negative effect on his naps. If so, I'll have to cut it back, or cut it out.

If this works, it could be the beginning of Andrew catching up to his age. I'm thinking if he can catch up a few days every week, maybe he can make up a few months soon. The DHA bath his brain is getting, has to be good for catching him up to speed. I am doing it for myself as well. I figure I am not actively trying to learn anything right now, so I thought maybe I'd try to start learning a language or studying something to see how well I can pick it up. We learn what we need in college, then stop pursuing learning when we're done. Maybe, if I pursue learning something new, I can start to pick up some new skills just like I'd like Andy to.

I'm excited for both of us to give these supplements a good trial, for at least 6 months. So, I'll see where we are both at by Andy's third birthday in May.

Andy can push up on his hands at 28 and a half months

Today at Andy's school, he was laying on an incline on a giant wedge, and pushed up on his hands. It was wonderful to see. He had some beads in front of him on the wedge, enticing him. There was also another baby on a wedge in front of him, and the baby was inclined towards Andy. It was as though they were both trying to get to the top of the mountain. The other baby was able to army crawl, and Andy seemed to be interested in him. He kept pushing up on his hands and holding it for a minute or so. It was very exciting to see, after nothing for SO long now.

I then propped his butt up, and got him on his knees and held his hips. He then started to rock, which was also surprising and exciting. So awesome to see this, and he was having a lot of fun at school as well.

I am really hoping he won't lose this skill, as many of his new abilities seem to go away for months after I first see them. I can't wait to see him get his butt up in the air on his own as well.

We went to Disney World

Andy with his (kid sized) headphones from Best Buy

Andy is 28 months old and still non-mobile, and pretty much non-verbal.  However, we bit the bullet and scheduled a flight to Orlando, Florida in mid-September to visit Disneyworld. It is supposed to be the least busy time of year. Initially, we wanted to wait until Andy could walk, but we really don't know when that will be. My 4 year old daughter Gabby is very into princesses right now, and if we wait too long, she may be out of the princess phase by then. So, we scheduled at 4 day, 5 night, Sunday through Thursday trip.

Andy was a dream on the flight there. He didn't make a peep. We kept him entertained with a headphone set and our iphones. He watched Blues Clues and listened to the Black-Eyed Peas. He just got over an ear infection, so we were hoping his ears wouldn't bother him, and I don't think they did. The bus ride there was also great, he was very good.

The weather was supposed to be in the 80s, but every day was sunny and 92 degrees, so this really irritated the hubby and Andy. The heat caused a lot of irritation, and by the third day, Andy was blowing his top. On the plane ride home, he was completely inconsolable, and cried the whole 2 and a half hour flight. I felt bad for taking him, but he did enjoy about 70% of it, I'd say.

Seeing just a hint of verbal understanding from Andy

Today, I told Andy, "lets go say night-night to daddy", and he held his hand way out and said, "da da" then open and closed his hand. While nearing the end of his bowl of food, Andy said "ahh done food", and  didn't open his mouth anymore for food when I tried to feed him. So...I am hoping that these little tidbits will lead to more talking. I think he is finally trying to communicate with me verbally! Thank God! I'm worried sick over him, it is so nice to finally see some results from the speech therapy. He has been going for two months now. First once a week for a month, then twice a week for a month. We are now going to return to once a week for a while. With school starting, he is going to have a ton of weekly appointments, plus private ones. We'll see how much we can handle piling on, in terms of extra speech appointments.

Speech revisited

I have only heard my son say a random few words one time, and then never again over the course of these 27 months. Andy started speech therapy two months ago, and I have to say it's been the most productive of all the therapies so far. he still isn't talking, but is becoming more vocal, and is making more attempts to communicate with me.

Today my son cried and murmured to my husband what sounded like "I want mama". It finally makes me feel like I am doing something right.

Confused about more children or not

I was very sure that I didn't want to have any more kids, but lately I have been having second thoughts. I keep thinking if I have another one, maybe they will be normal like my daughter. My son has brain abnormalities for unknown reasons. Nothing genetic has been found. I've been seeing other mothers with special needs kids having babies, and it just makes me think, "am I really done"?

I won't know for another couple years I guess. If Andy starts to walk and talk, I could change my mind. If he doesn't, I will probably close the doors on it for good. I just can't see having an infant around, when I've got to still carry him around. And besides, I HATE being pregnant so much. It is terrible miserable torture for me, which makes me think I am out of my mind for even considering such a thought.

I think it comes down to regret, right now. Will I regret not having any more. If I had another one, in an even worse scenario than Andy, I know I would regret that too. I probably should just count my blessings and be happy with what I have, I guess...

Rough patch

Things have been pretty rough lately. I find myself just trying hard to get through each day. I play Farmville on Facebook to keep myself from worrying so much about Andy. It actually works well. I play while Andy is asleep. I find myself just trying to get through these days, and hopefully I'll come up for air soon and he will be doing something new. Andy is extra irritable lately, possibly due to a molar tooth coming in.

He moves around backwards a little bit in the gait trainer, but I think he gets bored in it. I am trying hard to have his AFOs on his feet anytime they are touching the floor, which means sitting in a chair too. He doesn't care for me putting them on.

The eye patching hasn't been happening a lot lately because he is SO irritable already. Why add to the irritation?

Appointment managing for Andy lately has been tough too. I find myself dreading scheduling some of the visits. There are so many to keep track of. Lately I feel like all we are doing is going to appointments.  It just feels like no fun.

We have the gait trainer

Andy's gait trainer has arrived a month later than promised, but it is here. He isn't doing very well in it, so it has been depressing. I try to put him in it two to three times a day, usually ten to twenty minutes at a time. At least he will let me put him in it without fighting and fussing. He will stand straight up 5 percent of the time, and maybe bounce a little. I guess I am not expecting to see steps for a few months.

How much therapy does he really need?

We just had a two week break from therapy visits due to a change in insurance, and I have to admit, it was so nice. We are currently going once a week for physical therapy and speech therapy, and I wonder if PT could be cut down to twice a month. I work with him every day, and soak up everything they tell me, then put it to use. His therapy is currently a 30 minute drive, and by the time we get there Andy is melting down. DVDs arent working, music, toys, he's pissed when we get there. The facility that is ten minutes from us has a long waiting list right now, so that's why we are venturing out further. I am just not sure, but my gut feeling is that Andy would still benefit from going in twice a month. All the visits are just taking their toll on me.

Bouncing around the stages of grief

I am most definitely in the grieving process. I can see that now. When I first heard that when you have a child with special needs, you need to let yourself grieve, I thought "what would I be grieving"? For me, I am grieving the loss of a normally functioning child, because realistically that is what I thought I had. Then, all that was taken from me when the normal developmental milestones were not occurring. I was in the denial stage for a few months, probably from when he was 9 months old, until he was 14 months old. Because he was 11 months old when I took him tom the neurologist, so I somewhat was accepting that something was wrong. At 18 months old, scheduling the MRI showed the denial was over. The anger lasted for a year, and I still tend to revisit the anger. The depression is still hanging around, although some days I am feeling very accepting of everything in my and Andy's life.

Today I feel accepting of the fact that my son is very impaired, and will require special schooling. When I give up the hope that he will attend a normal school, it seems to help me be less sad. Constantly hoping for things that are way out of reach, is just so painful and torturous. Telling myself that Andy will be in a special school, and let's see how much he can learn, seems to work the best. Giving up the hope that he is going to sit up or crawl, and just putting him through the motions of these activities, and hoping that maybe he will just pick up a tiny fraction of what his brain needs to do these things is what I am focusing on. Not the big picture. It's too self defeating.

Some hours of the day, accepting, some hours or minutes of sadness. It's okay.

Too much

The great feeling I had from the mom  support group has faded, although I am thankful for Andrew's current abilities. The fact that Andy couldn't walk or crawl was muffled out by the other mom's whose children couldn't swallow food, or maintain a sitting position. It actually made me feel proud of him for what he can do. I think that is what made me feel the most peaceful. And hearing about the other mom's similar struggles.

Today, I am going to bed early and hoping for a better day tomorrow. There is simply too much laundry, too much yard work, too much housework, my kids need too much attention, my poor husband has to work way too much, and I am coming down with a sore throat and fever. My 4 year-old daughter, formerly my sweet angel, now a little devil is driving me crazy. Way too sassy, too much attitude, too picky, too impatient, oh God help me. She is way worse than Andy at this point, in terms of stressing me out.

Time for bed, time for bed.

At peace

I went to a moms support group tonight at my sons physiatrists office. It was my first time going. After having gone, I am feeling very at peace now. Just talking with the other women in person that understand how exhausting it is felt very freeing. I came home feeling like I fully accept whatever may lie ahead, and am happy with the way my family is. We all love each other so much, and are grateful to have each other.

How old is he?

This question stinks, as all strangers like to ask it. Now that he is two, the looks are getting even stranger. Or their mouth hangs open, or they just say "uhh ok" and turn and walk away. It's just something people like to ask, and it sucks. Yes, he's two. A non-walking, not yet talking two. Sigh

Although, I am very excited that Andy is using the word "up" pretty regularly now. When this word first surfaced a few months ago, it only hung around for about two weeks, then vanished. Now that it is back, I'm hoping it is here to stay. I love how he can verbally communicate SOMETHING to me finally! He looks at me, then says "up", and I pick him up and praise him for telling me "up". I tell him, "you told mama up, so I will pick you up". But while at the store today, when he was in the basket, I said "oh, you want to get up, but mama will pick you up when we are all done at the store".

So thank God for giving us something we so desperately needed to see. It confuses me though, because the gross motor is still so bad, but speech is emerging. I know there are a lot of mobile, but non-verbal kids out there, I guess I just thought he would become mobile first. It makes me scared that he will not be walking for a long time. I have already accepted this, and expect to be ordering a wheelchair for him for preschool. It's hard to be optimistic anymore, I feel like I'm just kidding myself.

New outlook

I wonder what Andy would think if he read this blog 10 years from now. Especially, if everything is "okay" with him. He would probably wonder why I worried so much, and why was I so sad for him all the time? When I look at him, he is happy. He doesn't know what he is missing out on. When I am sad, I am usually thinking too far into the future. Dreaming up sad scenarios that haven't even occurred yet. Or, I am constantly thinking of what he should be doing right now, and it hits me hard.

So, I have to reframe my thinking. Andy's physiatrist enforced this when we saw her yesterday. She told us we have to stop looking at the target, and celebrate his current accomplishments. I agree completely. There are things he can do now, that a year ago seemed never possible. He just turned two, and that was hard to swallow, but it is fading now.

He is a happy boy, so I should be happy for him. He has so much fun playing in his outdoor car toys, and electronic toys. He loves interacting with his sister, and music. Music makes him so happy, and is calming for him. He likes Lady Gaga and Black Eyed Peas! He finds happiness, even without movement. So, I will too.

Sad day/ End of Year evaluations

I am so, so sad today. It all hit me after my son's IEP was done at our house, and I read over his goals. Finger feeding, getting into/out of positions, crawling, standing and maybe cruising. I am so overwhelmed with sadness and I feel so helpless and lost again!!! I thought I had it together, but as I have seen from posts of other special needs moms, there are many ups and downs. Perhaps more downs than ups. You feel good for a while, then something triggers sadness. I know this will pass. I just have to continue on my quest to have a great summer, regardless of disabilities.

Swim class and family birthday party

I bravely have Andy enrolled in a 18 month to 3 year old swim class, when I really should have him in the 6-18 month class. He is two years old now, but still at a 12 month old level, and non-mobile. However, I was brave, and put him in a class with his "peers". I was reading that it is important for Andy to do activities with normal children, but maybe they should be normal 12 month olds. Who knows. It is hard when the instructor says, "okay, now let your kids run around and explore in the shallow water", and there is Andy, just sitting there. Or someone will say to me, "wow, he is so calm, and not running away from you". Lately, I just don't want to explain anything, so I don't. I almost feel like I am going to make them feel bad for saying what they said. But they aren't thinking when they say things to me, so why should I be so protective of their feelings? It is so confusing lately, on how much to say to someone, or just let it all slide.

The family birthday party went well, in the way of good weather, and good behavior from the kids. Andy has had a bad week, so it was nice to see him enjoying himself. I had a few comments from family members like, "Andy is doing so well", and "he's fine, don't worry", but easier said than done. I don't know why they say it. Maybe they feel I need reassurance. I'm sure they can see my anxiety over it. I just don't say anything back to them either, because I just don't know what to say or think anymore.

Headed for derailment

We celebrated Andy's second birthday today, but he was in a "it's my party, I can cry if I want to" kind of a mood. ALL day. It's to be expected after yesterday's ER visit for a fever of almost 107. Another terribly bad day, yet again. I was hoping his birthday would go okay, but Andy isn't paying attention to the calendar. Oh, how I need a long break, not just two hours, how about two days??? 

So, I thought I was doing well as a parent. I've been getting Andy to all his therapy visits, to school, and to extracurricular activities. I've been on autopilot. I was feeling proud of myself for getting everything accomplished and treading water with house work. However, when Andy's pediatrician saw me a few days ago, she said I wasn't looking well. She asked if I had lost weight, and mentioned that I need to take better care of myself. She suggested that I can't take good care of the kids, if I couldn't take care of myself. I didn't get too shaken up by the comments, because I feel she may be somewhat right. 

So maybe she's onto something, I have been lightheaded and overtired. Before this train jumps the track, I have to take a better look at how I'm treating myself. Just because I'm keeping all of our appointments, doesn't mean I am taking good care of myself. It doesn't reflect that at all. My appearance and mental state, is what reflects that. I've been emotional, not happy, not cheery, and everything else that comes with caring for a special needs child. It's draining me, I know that. 

So, I am looking forward to slowing down for the summer. School will be done, no more home visits, and will probably slow down on the private visits. The kids recreational classes will be over in mid june, and we will just go do things as we feel we can. I am not going to over schedule myself, I need to take it easy for the summer, to get myself "back on track".

My broken spirit

I just spent my wedding anniversary in the ER with my son and husband. He woke up with a fever of 106.7. Seems to be an upper respiratory infection. To top it off, I went to a toy store to get a few more gifts for Andy's second birthday, and was handed some thoughtless comments by the cashier. She asked how old the kid was that I was buying for, I said "two". She said, "oh, this stuff looks like what you'd get for a real little kid, like a baby". I didn't feel the need to explain my sons 9-12 month status, and just said "oh, okay" paid and left. If I wanted to be a b!tch, I could have made her feel bad, but I didn't have the energy. I just don't care right now. People say crazy stuff all the time, it is just par for this course. A course which I'd like to run her over with a golf cart on.

Lately, when I look at myself, I feel my spirit is broken. Even around the other preschool moms, they are all so cheery, and I am dreary. I feel I would be a totally different person if andy was running around playing just like all the other kids siblings do. Then I could stand around and happily chatter with everyone, and not worry about racing off to the next therapy appointment right after. I love Andy so much, it has really changed me. I just don't fit in right now, with normal parents. It's hard to relate to my sisters or anyone without special needs kids. It is just a completely different world. Priorities are way different, everything is different.

Motivation down again

It has been a hard week with Andy having a cold since Mother's day. I went a few days without eye patching or putting on his AFOs (ankle foot orthotics), because he was so miserable. Now getting back to it is hard, especially when I know he is so far from walking. My guess is that he won't be walking for another year, or year and a half. He will be two in a couple of days. It is really hard, knowing that he is two, and still non-mobile and non-verbal. I'm just very sad about it, but I know it will pass soon after his birthday. I hope I won't be too emotional in front of everyone.

It also sucks seeing all these newer babies at the swimming pool, and at his school that can already do so much more than him. At 6 months old and 9 months old, doing all the right things, it makes me so sad. It's really painful. It's hard to go through the motions, but I push myself to do it for him. Because we believe in him, and we would do anything for him.

Best use of Andy's nap time

I used to allow myself to rest and take a nap if I wanted during Andy's nap time. A recent comment made me start using his nap to clean more. It was hurtful to hear about my messy house from someone else. I have to say, it sucks not getting that time to relax. The house looks nice, but I am wiped out. So, I will probably just return to taking better care of myself during Andy's naps. I just don't think it's worth it, to not be refreshed for my kids and husband. I will probably just tackle something small, and then rest/relax until Andy wakes up.

Had to cancel therapy/Thank God for naps

I thought I was on top of everything this morning. I had taken my shower and dried my hair before Andy was awake. I even had my four year old Gabrielle's waffles almost ready for her when Andy woke up. I got his oatmeal ready, and he ate well, and so did Gabby. The screaming started when Andy saw the tooth brush coming at his mouth.

He screamed and screamed and was inconsolable. I put him down in his crib, so I could brush Gabby's hair, which she hates. Her hair is long and curly, and she always has a meltdown. So, of course, huge meltdown, while Andy is screaming. Then I am screaming at her, and I try to go and console Andy, and it can't be done. I put him on the floor with some toys, and think "should we still try to go to therapy today"? It is a 25 minute car ride, then he has 45 minutes of PT followed by 45 minutes of OT.

I look at the huge pile of dishes in the sink, and the big mess in the family room, and I am so stressed out. I try to proceed with getting them ready, but Gabby is screaming and crying in her room, and so is Andy. I decide it's best to cancel, and try to calm everyone down. I've tried to push through before, and I just end up regretting it when I get to the office.

I cancelled, then went in and talked with Gabby to get her to settle down and stop screaming.  Then Andy started calming down. He played quietly with toys, while I cleaned up all the dishes. I got them done, and got the family room cleaned up, which would be used in the afternoon when Andy's teacher comes to visit.

It was so nice to take the time and get the house cleaned up, instead of having to rush out the door for therapy appointments. Lately, the house has been let go, because of Andy needing constant attention, and his appointment schedule. We all ate lunch, and Andy easily went down for a nap. While he slept, I got both bathrooms cleaned. Thank God for nap time!!! I'd never make it, if it weren't for Andy's nap time.

What's all the fuss?

Had to leave the house in the middle of doing laundry, due to Andys constant screaming. He was fine in the car and took his nap in the stroller at the mall. I'd prefer him to nap at home so I can get stuff done around the house, but it's what we had to do today to keep him happy. He has been having a runny nose, not sure if due to teething or a cold. Got a little shopping done, so I made it worth our while.

Bedtime trouble

We have a bedtime routine we have been using forever, and nothing has changed. Lately, Andy screams for an hour or two when it is time for bed. It has been tough on everyone. He is so angry it is hard to calm him down. I finally got him to go down tonight with a really calm voice telling him it's okay, but it only works after he's been crying for a while. He will be two in a month. Why does this have to be so hard?

AFOs are building confidence

Well, it seems the AFOs (ankle foot orthotics) are building Andy's confidence in standing and playing with toys. Andy is 23 months old, and still not standing independently or walking. I am finding it hard to find the hour a day to sit down and put the AFOs on. I thought that when I got them, I'd want to put them on all the time and be more motivated, but I'm not. However, I think in the few days he's been wearing them, he is becoming more tolerant of them.

We are currently patching Andy's right eye for two hours a day, so I can't help but feel badly when I have to put the AFOs on as well. I don't want to completely irritate him, and when he is sick or touchy it is hard to do either to him. So, I'll have to pray for extra motivation tonight.

Picked up AFOs

We brought home Andy's AFOs, and they look great on him. I was surprised at how hidden they are, you really can't see them at all when they have pants on. We will break them in at first, having him wear them just one hour a day at first. Next week, we may move up to two hours a day. He doesn't mind me putting them on him, so I'm happy about that. He was actually laughing yesterday when I sat him on my lap to put them on.

We worked on sit to stand, and stand to sit, while he had them on, and he played by the couch. He has yet to stand on his own. We are awaiting approval from the insurance company for the gait trainer. When we get it, he will wear them while in the gait trainer. Hopefully, we will have it in time for summer.

I am looking forward to seeing him stand on his own, and feel like the AFOs will soon make it possible for him. The orthotist felt he will be grown out of them in six months, so we'll see if that's the case.

Switching gears

Andy is 23 months old, and still cannot crawl. In January, I was telling his physiatrist that even if I had a physical therapist living with me, I don't feel it would make any difference. He just isn't getting how to crawl. We have to just wait for his brain to be ready.

Lately, I have forgotten to focus on other cognitive skills for Andy to learn, such as counting and alphabet. I am so consumed by the physical stuff, that I need to take a break and reassess what is being missed. I would really like to start focusing more on his language, with flash cards and felt boards. His physical skills will come with time, I need to switch gears and work on cognitive, cognitive, cognitive. It's very important to me to get him more on track. I really feel he is ready to learn, and can take in new information right now.

He is two years old, and isn't a baby any more. I am ready to raise my expectations for him, and push him even harder. I think it will pay off by the fall, when he will be joining the two-year old intervention program.  I am continuing to stay at home with him, so I am ready to get all kinds of therapeutic activities going that he and his sister can do together.

I was also reading in the early intervention stuff, that it is important for Andy to be involved with typical children as well. So, we will be on the look out for things that we can do with the community as well.

Come on Andy! On the tip of his tongue

Andy will be two in May, and I am praying for him every night. Right now, I feel like I'm holding my breath. What are you trying to say Andy? He is trying so hard to talk. I asked him the other day, "do you want more" and did the sign for more, "or are you all done, tell mama" and he slowly let out an "alllllllll dahhhhhh". I showed him my excitement and reinforced the talking, of course. Then today, I asked him, "do you want more, or do you want a drink" and he said "moh wa-wa". Also, a minute after Andy's uncle left and we were all telling him good-bye, I took Andy into his room and he said "byyyyye" real long and drawn out.

Oh, I can't wait to hear him start talking. It is so exciting!!! He also seems to understand more and more of what I am saying to him, which is so great. It is such a great feeling to see him carry out an action that I ask him to do, like can you put this in?

I am trying to look at Andy in a new light, and imagine that he can understand everything I am saying to him. To really believe that he is in there, and just can't express himself fully. I've been reading some of the inspirational stories on babycenter.com and on blogs, and they have been helping me to believe in him. I also don't feel I should lower my expectations, because he needs me to keep pushing him.

Making Andy play on hands and knees more

We are recovering from illness, but I have still managed to give Andy lots of therapeutic time this last week. Our PT visit was quite a flop this week with Andy's horrendous irritability, but we are using her advice on couch cushions. I put a cushion against the wall, so Andy has to play with his toys in four point, instead of just sitting on the ground. He doesn't want to roll off of the couch cushion as fast as he would my rolled up pilates mat (who has time for pilates, yoga, exercise...)so great! He was pissed on the first try, but I figured he will have to get used to it. After just a few days he is doing well with it. He prefers being on his elbows. Can't wait to see him pushing up more on his hands. He did it a little today.

This is all so slow and painful to watch. I am still using my "laughter is the best medicine" cure for sadness and frustration via Netflix. It helps keep the tears at bay. I would highly recommend it to everyone. It beats crying all night long about things you can't change anyway!!!

Hard time today

We have been sick in my house, first Gabby, then Andy and now me. Right now I am feeling my worst, plus Andy is very irritable today, I think from teething. He is crying a lot, and trying to touch a back tooth that hasn't broken through. To make matters worse, my daughter cries almost every time that Andy cries. She says it annoys her, and she is tired of hearing him cry, which is understandable. So, I have both of them crying, and I am really sick, achey, can't breathe, lightheaded, horrible.

By the grace of God, I get both of them to take a nap, and I too get to rest for 40 minutes or so. Then the lady from the Michigan Children's Special Health Care calls me. She tells me that the doctor has reviewed Andy's records, and although the microcephaly and Corpus callosum underdevelopment are there, they just don't cover developmental delays. I responded "Andy isn't simply just a typical kid who is a year behind and will soon catch up, he is severely impaired" and started crying. She explained that they only cover "medical needs", such as if he needed medication for something. They don't cover therapy, because of problems with the brain, which is leading to developmental delays. She says downs syndrome isn't covered, but a heart defect from the downs would be covered. The heart defect is a medical reason for coverage, whereas severe physical and cognitive impairment isn't a medical enough reason.

I am still so angry and am crying about this. When my husband got home, all I could do was cry. He was kind enough to take the kids to grandma's so I could get some rest. This is such a difficult time in my life.  I for the most part enjoy it, but I feel so sad today. I shouldn't have gotten my hopes up about them helping us. Them not wanting to help Andy just breaks my heart. I feel like he deserves so much, and I want him to have the best shot possible at having a normal life.

He's been so frustrated lately, and can't communicate with me. It is so painful to watch him struggling so hard all the time. Amidst all this pain and sorrow, I feel so lucky to have my husband. He is being really good to me and our family. He is working really hard for us, working two jobs and busting his ass, so that I can stay home with Andy.

I continue to pray for Andy's advanced development and happiness. His birthday is approaching, and that is hard as well, because he will be two, but is still so helpless. I really feel like we can still be a happy family, and find ways to make Andy's life enjoyable, but some days are more overwhelming than others I guess.

Andy is putting toys in !!!

Andy is 22 months, and not crawling or walking. Fine motor has been progressing a little, so I have been pushing it a bit more. I have been trying to get Andy to put toys into containers. We've been going at this for months, and I leave it alone, and come back to it all the time. The OT suggested trying different containers, metal bowls, all different things to find what it might be that will finally motivate him. He has a pink piggy bank that he loves, that came with 10 different colorful coins. He likes to close the door on the side of it, where the coins come out. 

I thought why not tip it on its side and ask him to put the coins in (while I hold open the door), because he is preoccupied with closing the door. I asked him to put a coin in, and he did it. To make sure it wasn't a fluke, I asked again, and he did it again. Ten times with all ten coins. When the coins were all in, he picked up a shape sorting toy, a green square and dropped it in. I was so thrilled!

I tried to ask him to drop things into a different container, and he motioned for the pig. Then he reached forward as far as he could, and pulled the pig towards himself. So, okay, we will keep using the pig to put things in. 

I thought I would take it a step further, and I got an empty box and put several shapes into it, along with some colored coins. I asked him, "can Andy take out the star"? And I showed him "this is the star", and placed it in the container. He reached in and tried to grab the star, but dropped it. I asked him again, and he reached in and pulled it out. I then identified the circle to him, and put it in the container with the other shapes. I asked him "can Andy take out the circle", and he reached in and took it out. I was truly amazed. I did it again with a few other shapes and he took the one I asked him to out first, and then emptied out the whole box. It didn't seem like coincidence, it seemed like he was doing what I asked him to do. I am over the moon. 

Fitted for AFOs today

We went to the therapy facility today, and the orthotist met us there at our usual standing appointment time. Andy was a little scared of the orthotist at first, probably because he was wearing scrubs and rubber gloves. I think he thought he was going to get his blood drawn. He sat well for the first cast of his foot and up to the calf, but then started to get restless. We were able to calm him with toys and by singing songs. He sat on the therapists lap, so he could see me, and so I could try to distract him with toys. I picked a cool design for his AFOs, the plastic parts will be blue with fire trucks and helicopters, and they will have yellow foam inside with dark blue velcro straps. Summer is on the way, so he can show them off. They will look very cool.

I am so glad we are finally getting moving on these. He is 22 months old. When I first asked his pediatrician if he would ever have a need for braces, she told me "no, those are for kids with cerebral palsy and muscular dystrophies". I also asked the first therapist about them, and she said we wouldn't even think about them until he is pulling to stand. However, I pushed the issue with his new therapist, and she said absolutely, right away. Andy does a lot of toe clawing with both feet, where he folds his toes all the way under his feet when standing. Plus, he over pronates (rolls his feet inward) big time. He just stands on the inside of his feet, most of the time.

We have also made an appointment to see a developmental pediatrician for the first time. because I feel she will be way more experienced with special needs children. Our physiatrist is great too, because all she sees all day are kids with special needs. I feel like we finally have a great team pulled together for Andy.

Feeling a little better about Andy this morning

I found this blog post late last night, and it gave me hope again. It is about an autistic woman who didn't walk until 2, crawled between 3-4, had an IQ of 70, but went on to get advanced degrees.

http://blog.donnawilliams.net/2007/05/27/hypotonia-and-the-presumption-of-mental-retardation/

It is so hard when you really don't know what is going on in their little heads. I don't even think a crystal ball would help, because I wouldn't want to know the future if it isn't good. I am going to try and search for more success stories, to keep me motivated. I really need it right now.

Running out of steam and more grief about retardation

We just had a bad weekend. My daughter was very sick with high fevers for three days. So now we are exhausted. Therapy has gone by the wayside, and I am just so sad again. Mental retardation is heavy on my mind again. Andy is not learning how to sit up or crawl, and he is almost two. Experts with 30 years experience are saying no sitting up, and continued infant like behaviors are early signs of mental retardation. I don't want to put my head in the sand about this, and pretend he isn't showing all the signs. If I bring it up to family members, they still feel it won't be the case for him. But my gut feeling tells me it is the case. His neurologist feels the same. It just makes me cry,but then I just want to keep moving and not let myself think about it. I try to believe that he can still lead a somewhat normal life, but I don't want to have my head in the clouds. We are just torn to pieces about this.

State help is on the way

After following up with the state, I found out that even though I was told Andy wasn't approved to be in the program, he qualifies to have follow-up visits and tests with specialists covered by them. His future equipment may also be covered if I take the correct steps to get it. He isn't considered eligible with GDD and hypotonia, but the brain abnormalities may get him into the program. We are still waiting to find out. If he gets in, the state will pick up all therapy copays, which would help out a lot. All my phone calls with Andy screaming in the background seemed to pay off.

Went to Lekotek today to borrow toys

Lekotek is an organization that provides resources for kids with special needs. We found out about them through our son's early intervention program/special school. We were told to go there to look at the toys and therapy equipment they have to loan to families. I made an appointment, and we went into a playroom to see what Andy might like to play with. Andy wasn't too thrilled with the first few rounds of toys brought into the room. Things were too loud, or just weren't his thing, so I asked the woman helping us "can I come check out the toy room with you"? It seemed to be the best thing.

My daughter Gabby looked around as well, because the leader told me the siblings get to borrow a toy as well, so they don't feel left out. Good thing, she would have been upset for sure. I found a different kind of toy table that Andy might like, and a keyboard that Andy could use sitting on a chair, or standing up. Some of the things in the room I was thinking of buying in the future, so I thought it would be nice to try them out first.

I didn't find too much at first glance, so she let me look at more toys and therapy wedges in the basement. I picked out a climbing wedge, a cube chair, a shape sorter, and saw several large items that I would like to borrow for the summer. Such as the cozy coupe, or large outdoor toys which would require my husband to bring a truck up there. I've seen the cozy coupes at garage sales, but haven't bought one yet, because I don't know how Andy would do with it. So, we will have to borrow it when the weather gets warmer, as a try it before we buy it.

It appears that there are Lekotek organizations nationally, their website is www.lekotek.org. There is also a nice link on this website for the "Toys R Us toy guide for differently-abled kids". I really like this guide as it explains toys that are good for fine motor, gross motor, thinking, language, etc.

We will be going back in once a month to borrow six items for the month. I was also told if we aren't ready to bring something back, we can hang onto it for longer, and just borrow less next time.

Andy is holding his sippy cup and drinking

Finally, at almost 22 months, Andy can hold his cup on his own. He can also bring the straw up to his mouth and takes a drink. I was so proud of him, and still am. I was worried it was just going to be a fluke, and I would wake up to find him, so helpless again. But he us doing it everytime I hand him the cup. Thank God!

This accomplishment is giving me the steam to tackle crawling. I am keeping him in four point more frequently. We are on the roll more. He doesn't respond well to a blanket or towel around his waist or under his arms. He puts his head right down and goes flat. But, I sense an upswing occurring, and I think he will get it soon. He seems more tolerant of this position lately.

I continue to pray. Working with him is so exhausting. He is nearly 30 pounds and almost three feet tall. I get so winded and tired. He is strong and resistant, which tires me quickly. Plus, my daughter is off to the side begging me to play with her. And the house is a disaster.

I am way overdue for a trip to the salon, but at least I let myself go to lunch with a friend yesterday. Ahhh, time without the kids is so refreshing!!!

Update: May 2011
Andy didn't continue to maintain this skill. He looks to me to get his cup for him, and then he drinks from the straw. I work hard everyday to get him to pick up the cup again. We use a two handled cup with a straw.

Borderline hypothyroidism revisited

Andy saw a second opinion endocrinologist as a result of a TSH level slightly out of range. This keeps happening, so I wanted to cover all bases and make sure he shouldn't be on medication for this. The doctor feels that for now, we don't need to medicate, and we can check again soon after he turns two. I am still awaiting the results of an "ultra sensitive" total thyroxine test, which will take three weeks. Even still though, the doctor feels we can probably put these worries to bed. I started to feel bad, because I couldn't help but wonder if he should have been on medication this whole time. However, she doesn't feel she would have medicated him either, so now I feel better.

Don't want to think about a wheelchair yet...

Just as I am trying not to worry about the future, I constantly have doctors, teachers and therapists reminding me that Andy may need a wheelchair for preschool. Of course, I understand the possibility.  If he is NOT walking a year and a half from now, yes, he will need something to get around with. We have a gait trainer on the way, and he is standing, beautifully (in my opinion). No buckling, his legs aren't weak, they are strong.

I know people are trying to prepare me for the future, and foretell me of what may lie ahead. But how can I stay positive with these constant reminders? I have told people that I don't want to talk about this now, because it is way too far ahead ( a year and a half away). I really don't feel I am being over sensitive, I just feel it is far too soon for this discussion.

Deciding not to look too far into the future

I think I have finally been able to keep myself in the moment. Andy is 21 months old. I have just been living in the moment for the past few weeks and I have been so much happier. I don't let myself worry about what things will be like when Andy is an adult, or teenager, or even elementary school. Even after my second neurologist told me "we may be looking at a picture of mental retardation", I grieved it, and am over it. I worried about it for about a week, cried every day and night, and I am over it.

I am not going to worry about this until someone evaluates his IQ and tells me it is extremely low. Even then, he may be smart in other ways, and the IQ test may not truly demonstrate his abilities. I am done worrying about this possibility.

Andy continues to make gains, but still is not crawling or standing. He is almost able to get into sitting. I think his confidence needs a boost. At times he will do it, on my bed, or with a pillow behind him. Today he sat up on his own, while laying on his back over my leg. When I saw it happen, we got to work on practice, practice, practice. Until he was worn out , and is now napping.

He still hates tummy time, and hates me holding him in four point/crawling position. I always get SO frustrated, and can't help but feel, NEVER again. Never will I put myself through this again. I'd have to be crazy. Or it would have to be several years from now, and I'd have to be convinced that Andy is done with his struggles.

After the sit up practice, I stood him up facing his crib, and he did a great job holding onto the slats. After he fell three times onto my lap, he started tightening his grip on the bars, and actually seemed to understand that he could keep himself from falling. He has always been oblivious to trying to stop his fall. Protective actions just aren't a strong suit of his, but they are slowly coming around.

I am happy to see his pincer grasp really coming around, more pointing, slight response to his name, continued signing of "more" and "eat", and him letting me put his hands on his sippy cup or utensils. And he has been much more happy lately. Everyone is noticing it, and saying that they see a difference in him. He is starting to enjoy things more, and laughs and smiles to show us how he feels.

So, I am going to continue to try to stick to not looking much past the next couple weeks ahead. Enjoying the kids, and loving my family for who we are.

Appointment overload

I am already starting to think about this summer and fall, and making it to all the appointments we usually have in a given week. Summer will be harder, because my daughter won't be in school and will have to come along to everything. She is only three, and can only sit still for so long. She gets bored with coloring books and crayons after about fifteen minutes.

So, for this fall, I may have to look into having my daughter be in preschool for more days, and for longer periods of time. This will allow me and Andy to get more appointments fulfilled while she is at school. We are already double stacking appointments and I'm not sure that triple stacking will work when Andy starts speech. Usually after the PT, then OT he is worn out and ready for his nap. Plus, siblings aren't allowed in the room for the speech therapy. I don't want to have to sit in the waiting room for these appointments, because I want to get tips from what the speech therapist will be doing.

A large part of the therapies are the take home message that the parents get, so that you can continue the work during the week. The therapy is only one hour a week, sometimes two and it doesn't add up to much over a whole week. So, it is essential that I pick up on what is being taught and try to repeat it at home as much as I can. So, I really don't want to be out in the waiting room.

It can also be really devastating when one of us is sick, because we have lots of appointments to cancel/school to miss. Then I can't help thinking about everything we've had to miss due to being sick.

As my daughter gets older, she should be able to better entertain herself anyway. We seemed to be balanced out pretty well right now with appointments, but it is a lot when you step back and look at all we have scheduled.

Gait trainer

Andy is 21 months, and still not crawling or walking. I was curious to see how Andy would do in a gait trainer, so I asked his PT about it. We both know he is not even pulling to stand yet, and still can't get into positions on his own, so walking is probably far off. However, he is liking standing against the couch to play with toys, and bouncing on rodey horse type toys and things like that. So, she brought it out and he really liked it. He was so smiley and happy, it was really great to see him so happy for so long. The PT and OT were there, and both said they had never seen him so happy. I think he liked standing independent of me, and felt safe and confident in the trainer/kid walk.  He wasn't walking on his own in it, but as she was pushing him, he was taking "reciprocal steps". The PT said she was sold on getting him one for our house, so the wheels are in motion with the insurance company. He has to officially be evaluated by the medical equipment rep, and they can't do this until next week. It should only take 10 minutes though. Equipment rental places near me say that this is not something they rent out, they are for purchase only because they are a special order. So, I still have to check with his school to see if they have any that could be borrowed, but I think they only have one.

He seemed to feel a new found freedom, I could see it on his face. I think he was most happy to be playing with his sister in an upright way. He loves her so much, they are two years apart. The PT mentioned that we could go for walks around the block, and all kinds of new opportunities will arise. She said we may start to see him come out of his shell more too, with the new movement.

Hypothyroid issues???

A few times Andy has had borderline hypothyroid readings when his bloodwork is done. T3 and T4 are always within the normal range. However, we have found the TSH levels to be slightly high, by two or three points. The top of the normal range TSH may be 6 and he shows an 8, the highest was a 10, so we aren't talking about anything in the 30s or 40s here. Just kind of "borderline" hypothyroidism maybe. I have an appointment to see our second endocrinologist for the first time next Friday. She is at a freestanding practice, not in a hospital. The local children's hospital cannot see him until June, (it is March 2), and this doctor has a spot next Friday, so we'll take it!  A pediatrician that came to talk to me during Andy's EEG suggested that we may want to give some thyroid medication a try for a while. If it is too much for him, and makes him hyperthyroid, then we would wean him off of it. It is something I will bring up with the new endocrinologist. Of course, it would be great to find something that might help his development along, but I don't want to set my hopes on anything.

Speech therapy

We haven't started speech therapy yet, but I think I am going to get the evaluation rolling soon. The school early intervention program told me they won't start speech therapy until age three. Another speech therapist with 20 years experience told me, she has never started a kid before they reach age two, because their word and sound base isn't developed enough to start working with. So, I am confused. I asked the pediatrician that came in to talk to us during my sons 24 hour EEG, and he feels the sooner the better for speech therapy to begin. He will be two in three months, so I feel it couldn't hurt to just start the evaluation and see what the therapist at his current facility thinks. It is just hard to add more appointments to our already full schedule.

Andy currently has three words he uses often, mama, dada and up. And then there are about six other words that we hear maybe once a week, which is awesome for me. I am going to try to do flash cards more often as well, because I'm sure every bit will help.

Finding special time for my daughter

I schedule twice a week swimming and ballet for my daughter. My husband comes home from work and stays with Andy, so that I can take her to her classes. It has been hard to keep my daughter from being jealous from all the time that Andy requires. So, this gives us special time together. I am also having a hard time keeping her busy during Andy's therapy visits. It is best if she is in school, or doesn't have to go with us, but lately she does. She can only color for so long, before getting bored. We may have to invest in a DS or something. Ipod works for a little while, but she is only three. Next year, I will try to better get her school days coordinated with his office visits.

My family thinks Andy will be just fine and don't seem to be worried

He's okay, it will just take time. That's what they all think. Maybe I am just over worrying. I just continue to pray for Andy and for strength and patience. Worrying doesn't help anything, I know. We are doing everything we can to help him. We are seeing an orthotist in a couple of weeks. PT still hasn't tried to put him in any equipment yet. I would like her to try soon, and am trying to let her do things at her own pace, but what's the hold up??? She doesn't want him to become dependent on equipment she says, but he clearly needs it. He will be two in may and walking seems nowhere on the horizon.

Eye patching update

Andy's right eye still drifts a bit to the outside, both eyes used to drift equally. We started out with alternate eye patching for two hours a day. For example, patch the right eye on Monday for two hours, then the left eye on Tuesday for two hours then, Wednesday back to the right eye again. The left eye improved rapidly, and we hardly see drifting now. I took him in for a recheck, and at the time, I was constantly forgetting to patch his eye. I'd only do it maybe 4 times a week. They told me to now patch for the next 6 weeks, two days on his "good eye", then one day on the bad eye, bumping up to three hours a day.

I now keep a calendar right in the family room where we spend most of our time. It helps me to remember every single day, and I only forgot once, because we were gone from home all day long. It is also helpful to try and patch during set times, like 9am-noon. This is my favorite time to do it, because he finishes breakfast around 8:45, then put the patch on. If we have running around to do for the day, I wait until we get back home and patch from 3-6pm, or if I forget and remember late, I'll do it 7-9pm. I don't like to have his patch on when taking my daughter to school, or running up to a store, because everyone wants to know "Oh my, what happened to his eye?". Every time. So, I just like to do it at home and get it over with.

Doctor says he will probably eventually need surgery on his right eye, the bad eye, we are just waiting for him to stop favoring his left eye. When he demonstrates "equal use" of each eye, he could then get the surgery if we feel he needs it.  They told me the next time they see us in a couple of weeks they will probably up the hours on the patching of the bad eye.

24 Hour EEG Update

Both times when Andy has had electrodes put into his hair, prior to the 24 hour EEG, he did fine with the process of getting everything set up. He didn't fuss at all and seemed to enjoy the technicians messing with his hair and ears. But not this time. The smell of the permanent glue seemed to bother Andy, along with the sound of the air gun they were using to dry the gauze onto his head. The sound set him off big time and I tried to keep him calm with singing and toys while the technician tried to finish up. The whole last 15 minutes he was screaming everytime she used the air sprayer.






After that, keeping him entertained in the room wasn't too bad. I brought a suitcase full of toys, and I asked the medical assistant if they could bring in a high chair for him and that was really helpful for entertaining. Getting him to fall asleep in the hospital was HORRIBLE. He cried for three hours, before conking out. I would try to soothe him every 10 minutes, then in longer increments of waiting, but he was really pissed off and couldn't be calmed down. Then he got the kid next door screaming.

When he finally fell asleep at midnight, I had just fallen asleep when Andy started kicking like crazy in his sleep. He was making so much noise, I was surprised he didn't wake himself up. It was like he was running in his sleep, and his hospital metal crib was rattling like crazy. The nurse came into the room asking "what's going on", and I jumped up and said "I don't know". I didn't realize he kicked so much in his sleep. The nurse told me "you deserve the mother of the year award". It was nice to hear instead of the standard "I don't know how you do it", which we've all come to love hearing. We don't have a choice, if you're a committed mother anyway. Andy woke me up every hour or half hour with his crazy kicking. I would jump up off the couch and say "what the hell", then I'd realize it was just him.

The doctor wanted us to stay another night, but I said no way. I saw several of his staring spells when we were there and documented them, and they got to see him all night long sleeping. So, I felt that it should be enough data.  They actually got 30 hours of recorded data in on him before we were disconnected from the electrodes. He hated this too, and screamed as they were pulling them out of his hair. We then showered him off quickly, just to get rid of the smell of the solution they used. He conked out immediately after putting him in the stroller. The poor thing just wanted to go home.


My family was helpful during our stay at Henry Ford Hospital in West Bloomfield. They had a children's playroom for my daughter to play in, and my husband and I took turns taking her there and my mom did too. I also got to leave the room a few times to walk around in the hospitals indoor garden/atrium, while my mother-in-law watched Andy, which was really helpful. I even left the hospital while MIL watched him to go to Subway and come right back, we were only gone for 30 minutes.

It wasn't so bad with all the help from our family. The neurologist feels 98 percent sure that Andy isn't having any epileptic activity or irritations. Good to know. Another thing ruled out.

Seeing some progress with language at 21 months

Just this past week, I am seeing progress with my sons vocabulary. He was limited to mama and dada before, but has now started saying "up", "baby" and "poo-poo".  Sometimes, after he poops, he will say "poo-poo". Lately every time he goes, I repeat to him that he did a poo poo. It may have sunk in. I also ask him every time he is crying on the floor, "do you want me to pick you up"?. So now he is saying "up" after he has been frustrated for a minute, or when I come back in the room, he will say "up". Usually when he is done eating or done playing with a toy. I don't hear it every day, but we are still hearing him say these words every few days. It is so nice to see him moving forward with something. The gross motor and fine motor, no such luck, but this is very promising.

We are going in on  Monday for a 24-hour EEG to rule out any seizure activity.

Hoping for a year of progress

This past year has been so depressing with my son at 19 months old now, and still no crawling, standing, self-feeding, or pulling up. I've spent the last few days being really sad about it, and have now caught a nasty cold. I've got to try to pull it together and put all pessimism to the side and try to stay positive. My son is getting therapy several times a week, which is hard when it is so cold outside. He can drink through a straw now, which is nice, and is an improvement. He can also hold onto objects for a little longer than before. He can also entertain himself for 10-20 minutes. Long enough to make dinner or take a shower.

His teething has been hell. His crying goes on all day long, usually for almost two weeks at a time. He becomes inconsolable, and that's when I get upset. I'm hoping for a better year, and much more progress.