Dr points out constipation

Andy was pretty irritable when I picked him up from school yesterday. He cried all the way home, and wouldn't eat lunch or dinner. I thought his ear infection was back. I took him to the doctor the next day, and she said his ears looked great. Then she felt his belly, and found he was badly constipated. She could feel a large hard stool in his belly. She showed me how to feel for it too, it was like a big rock in his stomach. He had been having small poops, but I didn't think anything of it, because he had a small appetite while he was sick.

We headed up to the drugstore for a pediatric glycerin suppository as advised by the doctor. You don't need a prescription for this. The doctor told me that if only small stools continued to come out, we would have to resort to a stool softener. One small stool when he woke from his nap, plenty of water, and he ate dinner. Then in the morning no stool, and more irritability. I read on line to try a teaspoon of corn syrup, and olive oil on veggies, which I cooked in the toaster oven. Then he ate lunch. I gave him another pediatric suppository, as it had been 24 hours since the last one. They can only have one a day. It took about ten minutes, he relaxed in his bed, then had a large stool. Finally! Poor thing has been miserable, and couldn't tell us why.

Pesky Ear Infections

Andy and I have been sick since Thanksgiving. Germs keep coming and going. Andy spent all night Saturday and Sunday crying and uncomfortable, so we went into the doctor Monday morning.  Poor Andy had an ear infection and an eye infection that was being treated by antibiotics. He stayed home from school for a whole week.

We actually had a lot of quality time together. He just wanted to snuggle and cuddle with me, and kept looking right into my eyes and smiling. He was so comforted by me, it was really nice. I felt like he was saying "thank you, I love you" with his eyes. He seemed to be getting better. Then on Sunday night, he woke up screaming and was out of control with crying for over an hour. I headed up to urgent care with him.

His ear infection was coming back and was now in both ears. They felt his current antibiotic wasn't working, so I went back to his general doctor first thing in the morning to follow up. Andy received the first of a three day series of antibiotic shots.

We felt so bad that Andy couldn't communicate to us what was wrong, when he was in so much pain. I'm glad I decided to just take him into the doctor once I realized I couldn't console him, and it was unlike other times in the past.

Now that Andy had a shot of antibiotic, he is feeling so much better. He had such a great day at school. I think he is relieved to be back at school, and that he is finally out of pain.

Andy's school update and family update

Andy's current state has been pretty good. He loves going to school. He shows affection towards his classmates, teacher and all school staff. He seems to enjoy being there. He is happy there. I spent the first several weeks with him, and then slowly stepped away.

I feel Andy's quality of life is better with school in it. There is only so much I can do to keep him happy and occupied. Meeting new people and having new experiences has been good for Andy.

Andy continues to take Risperdal, and needs it daily. He is a mess without it. It helps him to be cheerful, and not irritable all the time.

We are a family with a special needs child, and this is not easy. I still have very negative patches, but I keep trying to find ways to go on with my life. My daughter needs me too. She often falls by the wayside, when I get swept up with all of Andy's needs.

Having Andy and discovering all his limitations swallowed me whole. I can still become engulfed in it, but I have to still be a functioning wife and mother to my 5 year old daughter. I still have to try to enjoy my own life, and it's tough. I feel guilty when I focus on myself or my daughter. I'm trying to find a balance, so I won't be miserable. I am what holds this family together, and I have to be positive, upbeat and refreshed.

Andy is happy, and I should be happy for him. He does not know of his limitations or things he is missing out on. My goal now is to just try to make sure that my whole family's quality of life is good. I am ready to do what I need to in order to make sure my family has what they need.

We can still have great quality experiences, even if it is a challenge to do so.

Take care,

Amy

Waving Hi?

Andy is three and a half now. I've seen skills emerge and backslide too many times. Words come out of his mouth a couple of times, then I never hear them again. Or the army crawl emerges, then goes away for a long time. Right now, it seems he is trying to wave "hi". I really am not getting too excited about it, because I feel it will just go away in a few days, like all his other skills do.

I am hearing him say random words, then never again do I hear the word. I feel so upset, because it seems like his words are in there, we just can't get them to come out. We've both been really sick, which has allowed a lot of bonding time for us. He's been really cuddly with me, and giving me a lot of eye contact and smiles.

I am getting a lot of therapeutic toys for Andy for Christmas. I'm hoping that just pushing along, and not looking back will get us somewhere.

Lovely Day

Andy has been having a great time at school. He really likes everyone there, and has been really happy to be there. I am able to drop him off at school and go run errands on my own, it has been nice. I've been praying for him to have a better time lately, and I've been feeling better as well. He's not always happy, but he's been having good days here and there, which is a nice change.

I recently tried to wean Andy off of his Risperdal, but it went very badly on the days that he got no meds at all. So, I quickly started him back on the Risperdal at .25ml a day. When I went back up to anything over .30ml he was way too sleepy at school. We are sticking at .25ml a day, and I don't think I'll try to take him off again until the summer. I'm too nervous for him to have terrible days at school, I think summer break would be a safer time to try it. I was curious to see how he would do without getting the meds, and it didn't seem to be good. I wasn't patient to give it more than a couple days, so for now he will stay on the meds.

Kids are kids

Parenting stinks, no matter what. Disabilities or not. I have one of each, my daughter is totally normal. She really frustrates me. She's five years old though, she isn't going to think and act like an adult. There are times when I can't decide who is harder to parent. They are both SO tough.

Lately, I'm realizing that Andy's disability isn't always to blame when times are tough. He's just a kid, and he is going to have bad days and act up, just like other kids. So back to, parenting just stinks. I need more time each week, when I don't have to parent my kids. I'm finally starting to get it.

I've been able to leave my son at school, now that he knows everyone, and everyone has gotten to know him. I first started by leaving him there for the first hour alone, and noticing that he was quite happy when I returned. He was in a good mood, and hadn't been crying. We hit a turning point last week, when I would start to feed him his snack at school, he would start crying and lose it. It seemed like he was trying to tell me, "just take me home, I'm tired".

So, I asked the teacher if they could feed him snack, and see if he freaks out. They've done it twice now, and he's fine. As soon as I come back into the classroom, no matter what time, when he hears my voice he gets whiney and soon cries. If I return a little early, I stay quiet and don't let him see me until it is almost time to take him home. This is working so far.

It gives me time to run errands without kids, or go visit with people. Time that I don't have to be a parent. I do still feel like I should be there checking on Andy, but it just makes things worse. Now that I trust they are doing what I would do with him, and they know about some of his triggers, I feel better about having him there without me.

Feeling better

The sadness patch seems to be over now. I put my mind on the back burner and got all my laundry done, and cleaned up the house. I was able to get everything done while Andy stayed busy playing with my daughter, or watching TV. Now that the house is in order, I feel it will be easier to face the week, and getting the kids ready for school should be easier.

I am happy with my life right now, and accept my current motherhood duties, although I still get sad about the scenario. It doesn't mean I hate it, but I think it is okay to occasionally be down, and just let myself feel the feelings that come to me. I know there are people that have it much worse than me, so I don't want to seem unthankful for everything that I have.

Andy's developmental delays redefine every single situation for all of us. We have the power to choose to be in situations or not to participate in things that we don't feel comfortable with. We have to make things more simple, and I find myself savoring small moments in our lives.

The Good, The Bad and The Ugly

I've been seeing way too much of the ugly lately from Andy, and my daughter! Oh, I am trying so hard to stay sane! My son cried for an hour at school today, then cried all the way home for 40 minutes. It is so mind numbing. I can't even focus on anything else. I'm just trying to keep my sanity here. I kept thinking, "now I understand that song 'I wanna be sedated'". I'd love to be sedated for a few days, just put me out of my misery, my God, I'm hanging on by a string. I couldn't do anything, after putting my son down for his nap, but sit on the couch and fall asleep. Despite all the laundry and cleaning that needs to get done. I need a break, Lord help me! Just WAY too much ugly lately. Enough already, I've had my fair share. Now I can go to bed.

What I'm grateful for

Although I feel that my time spent in the motherhood realm has been unfairly tough, there are some things I am grateful for. I am extremely grateful that Andy takes nice long naps. They really help to get him out of a bad mood, and give me the break I need between morning and afternoon. I am also grateful that he is a really good sleeper at night. He has slept through the night since he was 9 months old (when I stopped nursing). Ever since, he always sleeps 12 hours a night, unless he has a fever and needs medicine. He is also an excellent eater. He will eat anything, and loves food. He has no problem swallowing or chewing, and I am SO grateful.

I am also grateful that he is able to give us smiles and giggles, and can show us affection. It helps us to know that he loves us, and is happy to be with us.

Sample letter for a one-on-one assistant for special needs class

I recently wrote a letter to the special needs director at my son's school. He is in a special needs preschool class. I wouldn't consider it an SXI (severely multiply impaired) room, because all of the children in the classroom are able to walk. Some of the kids can talk. Some of the kids can let you know what they want through gesturing. This center does not have a lot of the equipment my son needs, but I feel they are doing well with my son Andy so far.

The letter I wrote was to request that a one-on-one assistant be hired just for my son during his class time. Feel free to copy this letter and use it for your own child. The special needs director says that she will consider my request, and would like to meet with me this week.

Sample letter to petition your school for a one-on-one assistant for your child:

October 8, 2012

From sender of letter

Mother of Andrew

Address

City, state, zip

Ms. Special needs director

Director of Special Education

address

City, state, zip

Dear Ms. special needs director,

After observing and actively participating with my son Andrew's classroom/XXX teacher's class for six weeks at the XXX School, I feel he needs a one-on-one assistant to help him while at school. The assistant would remain with Andy and aid in his personal safety around the other children, and help him to stand while engaged in activities. Andrew is quite unable to do a whole lot for himself, and lacks protective skills.

Andrew requires assistance getting in and out of his wheelchair, getting in and out of seating for activities, and needs to be fed at snack time. Andrew also needs to be given the opportunity to stand in the classroom for short periods of time. These activities would include standing at activity tables where children explore and scoop through things like rice or corn. Andrew can stand with the assistance of an aid, and needs to be watched so that he doesn’t fall over. Having Andrew stand for small periods of time helps improve his brain functioning and promotes bone density and bone growth.

Furthermore, he needs to be actively watched while playing with other children on the floor to keep the children from stepping on his hands, legs, or climbing on him. He also needs to be monitored, so that he won’t bang his head on the floor, due to falling from seating, or falling backwards from a seated position on the floor, as he lacks protective measures for falling. One of Andrew’s doctors, XXXXX,D.O., suggested my pursuit of a full-time assistant for him at school.

I would like to further add that Andrew’s teacher, XXXXX, and the assistants in the classroom are doing a wonderful job. I do not feel that Andrew would be neglected, but I do feel he needs a lot more assistance than the other children in the classroom do. I am most worried of him being harmed, if a staff member can’t get to him fast enough, when another child may be hurting him accidentally. I have been unable to leave him at school alone, for fear that he will get hurt. I also stay at the school with him, because I would like him to have opportunities to be in standing positions, which would require someone at his full attention that could not assist with other children.

Please consider hiring an assistant to work with Andrew one-on-one while he attends school. Please also let me know if you can think of another solution to this issue. Feel free to contact me at XXX-XXX-XXXX, or by email at XXXXXXX.

Thanks for your consideration,

Amy H

House building progress

The second story of our house is being built. Along with the garage. Right now we are at the 10 week mark. The first several weeks were spent waiting for permits to be pulled, and watching the basement get framed and poured. 

The basement footings were poured at the five week mark. We signed all papers to start the house in mid-July, and the footings were done August 24th. The basement forms were put in and poured September 2nd. This is going to be a walkout basement. We are anxious for the roof to be put on, so that everything won't be getting soaked by fall rains. Fortunately, the weather has been very favorable for building in the last few weeks. 

Rough Patches

We've been suffering through several rough patches with Andy lately. He has a swollen gum around one of his upper molars that I've been treating with Orajel. The dentist says the teeth need time to break through all the way. I've been giving him soft foods, but when it is time to eat, he gets really upset. I may have to consult a third dentist, to ask about his gum. I try to floss in there, but there doesn't seem to be any space to floss due to the crying. 

Gabby can't stand Andy's crying, and neither can I.  She is only five, and quite often feels that Andy is the only one that I care about. In her own words. It sucks. Going through all this truly sucks. 

I try to stay distracted with cleaning and de-cluttering the house in preparation of our move this winter. Andy doesn't entertain himself for long though, and when he gets bored he gets really pissed off. 

I try to tell myself that other parents of normal children have to be going through the same ups and downs as me, but it often seems that we are in more patches of frustration and anger than most.

I need to petition my sons school for more help

I have been staying at my sons school on a daily basis with him. I think the teacher and parapros are doing an excellent job. However, their hands are very full with the twelve children in the class. I still don't feel comfortable leaving him there without me. He easily gets stepped on by the other kids, and has to be picked up and moved when he moves into dangerous situations.

I think I need to write a letter to the school explaining why I feel my son needs a one-on-one paraprofessional in the classroom with him. I've got to get the ball rolling now, so that he can have this type of service for the years to come. My family doctor told me a boy she knew of who was deaf had a parapro with him at school from kindergarten through high school.

Time at home with him has been really bad. He gets miserable quickly if he feels pain, or gets bored. I'm going crazy trying to get him to stop crying. I'm finding myself asking for more breaks from the kids. I don't feel guilty about it either, not anymore...

Stories needed from special needs parents and siblings

Lisa Davis has asked me to share the following post with those of you who are caring for people with "invisible disabilities".  Her email is located below for those wanting to share stories with her:

My name is Lisa Davis and I am currently teaming up with writer and neuroscientist Tricia Bliven Chasinoff to publish a book in the series called Easy to Love But... The first of the series, Easy to Love But Hard to Raise, is already published and out in bookstores and available on-line.

Easy to Love but Hard to Raise is an anthology of personal essays written by parents of children with ADD, ADHD, OCD, PDD, ASDs, SPD, PBD and/or other alphabet soup diagnoses that takes the already difficult job of parenting and adds to the challenge.

Ours is second in the series, and will expand the focus beyond raising children with disabilities.  The current book will address the experiences of children, siblings, spouses, and others who have close relationships with people who have been diagnosed with one of these "invisible disabilities".  We are also interested in hearing first-hand accounts of people who have been living with these disabilities.  While this book will not address parenting, per se, we will be including some stories from parents, specifically parents of adult children with disabilities or parents who have been affected by multiple generations of disabilities (i.e., when both parent AND child are affected). 

We need more stories and we'd love to hear yours!  You can e-mail triciaandlisa@gmail.com for more information.  

Can't find the right school

I just can't leave Andy at school. He is so helpless, and defenseless. He gets upset so easily. All the other kids can step on him, and rip toys out of his hands. He can't do anything about it. I just want to cry all the time. Right now, I am trying to just take him in for services, and stay a little extra for some class interaction with the other students. However, school just doesn't feel right for him. In fact, it feels all wrong.

I feel that I need to gear up, and find better ways to be his teacher at home. It is just hard to find the energy and motivation. I feel exhausted all the time lately. I've visited several programs, and none seem to be the right fit for him. There's no way I'll leave him anywhere. He's like a 6 month old baby, and he's in a room of three-year olds. I'm crying again.

Pediatric Wheelchair

We received Andy's pediatric wheelchair for school. It is super heavy. It has three different names on three different manuals that it came with: "Kimba", "Ottobock" and "Leckey".  Slightly confusing. I am not currently using it for everyday errands. Again, it is way too heavy. I'm envisioning just using it for when he is in school. I don't think he will be riding the bus. We will live six houses away from the school. They said I can request that the bus pick him up, but I am going to see how it goes. We won't be living near the school for the first couple of months while the house is still being built. We will be living out of district, and he's been approved to attend this school while we build.

I have been doing small enjoyable things if Andy is taking a nap, or when he goes to bed at night. I've been scrapbooking, crocheting hats, making patch pillows, or trying my hand at sewing Barbie doll clothes for my daughter. She has fun being the designer, and I'm the seamstress. It helps take my mind off of other issues.

We are building a new house

We are taking a huge leap of faith, and we are building a new colonial-style home. We are currently in a ranch, but have decided to build a home with four bedrooms on the second upstairs level. However, there is a room on the main level, which could be transformed into Andy's bedroom if we need to do this. Meaning, if he should never walk, or if he is too heavy to carry upstairs. There is also a space that could be turned into a bathroom with a roll-in shower on the main level. We've thought that all out.
I have also looked into stairlifts for curved, 180 degree staircases, and have talked to a friend about platform lifts.

We wanted to build another ranch style home, but they are much more expensive to build than building a colonial or cape cod. We were quoted $150 a square foot, as opposed to $90-$100 a square foot to build a colonial. We also looked at a foreclosed ranch, but it needed way too much work. We then looked at a really nice, but way too expensive ranch.  The dirt road it was on wasn't too appealing either, I might add. Not to mention the fact that the school said the buses could have trouble going down private dirt roads, especially in winter.  So, we picked a paved road neighborhood, very close to his school. I could walk him there in nice weather.

I really like the look and feel of the colonial house, however, I have never lived in one. I am hoping that I will like it. We are having the laundry room put in on the second floor next to our bedrooms. We are hoping this will alleviate a negative point of the colonial home. We also will have a walkout basement, which we love the idea of, and have never had.

There will be many children the same ages of our kids, which I also like. Our current neighborhood, is full of empty nesters whose children moved out 20 years ago. So, we are excited and nervous, that we made the right decision. We have made our choices in the best interest of our kids.

You can see further progress in my later post here : Building progress

What to do if you drop your iphone in water

Long story short: my iPhone 4 came back to life (twice now) after letting it dry out for five full days in a ziploc bag filled with uncooked white rice. My phone was fully submerged in water for a few seconds after being dropped in the toilet. Yes, my iPhone fell into the toilet. Here are the details of what happened:

You have to fully submerge the phone in dry uncooked rice in a plastic baggie to suck out the moisture from the phone.  We let the phone sit for 24 hours. But later found this wasn't enough time, so the phone went back into the bag to sit at room temperature for a few more days.

**After the phone has dried out for several days (4-5 days), you must plug it into your charger and let it charge for several hours** You might think it isn't coming back to life, but might just actually need to be charged.

When the iPhone 4 initially turned on the next day (24 hours later),  it was acting funny, so it needed several more days in the bag of rice to fully dry out. Calls weren't working and the screen was looking yellow. We put the phone back into the same bag of rice. This time we let the phone sit for three more days. We then had my daughter test out the phone for two days by having her watch Netflix and play games. She reported back no problems with the phone. So, we got another new sim card once again for the now dry iPhone 4, and it was activated over the phone.

Before placing the phone in the bag of rice, I did not take the phone apart. I took my outside protective case off but that was it. I didn't remove the screen or battery or anything. I did take the sim card out, because I thought it would help dry it out more. I was successful at getting my sim card out after pushing the tiny pinhole on the side of my phone with a straightened paperclip. I had to push it really hard to get the door to spring outward. I later found out the sim card just had to be thrown out, because once the sim card gets wet, you will need a new one. It will no longer work.  The cell phone store gave us a 3GS sim card to use in an old phone with my current phone number until my phone came back from the dead.

I have been using the phone now for over a year, and it has been great. I do have a slight "yellowing" of my screen in one tiny spot, and can only see it when there is a white background. Other than that, I am SO happy my iPhone came back to life!

Honestly, I didn't panic too much when it first happened, I was mostly upset that my husband might be mad about it. I've gotten electronics wet before, and usually after they dry, they come back to life. So, I was hopeful the same would be true with my iPhone. If your phone goes out of commission, your cell phone carrier should give you a new sim card free of charge, and switch your account over to an alternative phone.

Good luck reviving your phone, I never attempted to open the phone at all. I left it as is, and let the rice suck all the moisture out of it.

P.S. I dropped my phone in water once again on accident, and it is up and running again after five days in a bag of rice. Hurray!

Scooting for toys

Andy is scooting around with a little enticing. I have gotten him to scoot as far as 25 feet, coaxing him with a toy. He will do about 5 little scoots at a time, on his belly, pulling himself with his arms. He will scoot with his own interest and motivation sometimes, just a foot or two to get to a toy. When I try to motivate him, I try to bring him down a long hallway into a new room, so he can see he can get somewhere on his own. I might have to put a long sleeve shirt on him next time, because the berber carpet seems to be irritating to his elbows after a while.

We hadn't seem him scoot around much since St. Patricks Day, back in March of this year. I was wondering when it was going to emerge again, he just didn't want to scoot for so long. He's been in PT all this time too! We are taking a break from physical therapy now, and he's scooting like crazy. Can't figure it out.

Abuse at my son's future school

We have been contemplating moving out of our current school district for a while now. I was skeptical of my son's future school not being keen on having parents in the classroom with the kids. It felt like they were hiding something as well. It turns out everything has come to light about an abusive teacher and parapro in my son's future preschool classroom! Needless to say, this has put the final nail in the coffin for us to move to a new school district. I had already spent the last couple of months researching a new district, and met with the principal about their SXI program. They are fine with my desires to be present with Andy, just kind of checking in, and my daughter will attend school there as well. In our current district, they would both be attending different schools.

Here is the news story from our local news, and a link to a message board talking about it as well.

http://www.clickondetroit.com/news/news/Livonia-teacher-fired-amid-allegations-of-mistreating-special-education-students/-/4714498/15179796/-/9j1kol/-/index.html

http://s6.zetaboards.com/Livonianeighbors/topic/8822988/3/

Take care of your kids, and don't be afraid to question anyone in regards to their care!

Scheduling time for fun

Being that summer just started, I am trying to make sure the kids have a spot each day to have fun with me. I've been trying to do more laundry at night, and the dishes at night, so I don't feel overwhelmed with housework during the day. I am very tired when it is time to go to bed, but it helps me to sleep soundly through the night.

The last few days, after Andy's nap, I stop what I'm doing and we get in the pool or play on the floor. I feel that I need to show Andy some fun each day, he is so easily frustrated. It seems to be helping him maintain a good mood. It is hard to set aside the time that is needed for everything to get done, meanwhile, keeping the kids happy too.

I feel happy when I honestly feel that we had a really good day, and both kids know how much I love them. Then add in the husband too, and that's a lot of moving and shaking. I have to be very thoughtful and mindful of everyone and their feelings. It's a lot to take on!

Risperdal update

The Risperdal (Risperdone) seems to be working pretty well for Andy now. He seems to need to stay around .25ml in the morning to not be too drowsy during the day. If I give it to him at night, he seems to have difficulty sleeping through the night. I tried weaning him down to half his usual dose, down to .125ml, but after a week of this the crankiness and inconsolable crying was back in full swing. He would get worse and worse each day that I continued the .125ml, so I went right back up to .25ml. His nurse said I could try giving him .125ml in the morning and .125ml before bed, but I am worried the bedtime dose will affect his sleep. So, I'm sticking with just the morning dose for now.

Now, I am confident that he won't be crying all day at school, and inconsolable to the staff. I still need to purchase him a soft helmet though. I am worried that if he gets mad if he's on the floor at school, that he will bang his head backwards onto the floor. I place pillows behind him at home, but can't expect that there. They should have him in a chair, but if he starts being able to do other things on his own, I'm not so sure.

Need to get VEP done ASAP

My head is spinning, there is so much to do all of a sudden. Andrew has had exoptropia in both eyes since 9 months old or so. This means his eyes drift to the outside (lazy eye). It is a type of strabismus. When the eyes drift inwards, towards the nose, it is called esotropia. Exotropia, is when the eye drifts outwardly, away from his nose. Andy's right eye mainly, drifts way out, but he can pull it back in when I ask for his attention.

In a nutshell, an optometrist told us that our son is very near being legally blind. However, three different opthalmologists have told us our son can see pretty well. He doesn't require near or far correction, but the astygmatism in each eye is probably keeping him from seeing clearly. He believes his vision might have him seeing just out of focus. The latest opinion doctor also suggested that children with neurological abnormalities often have trouble focusing. A pair of glasses has been suggested to see if Andy will "appreciate" the better vision, but I don't need to fight him on wearing the glasses. Okay...

So, then I took Andy to see a second opinion Physical Medicine and Rehabilitation doctor (PMR). He was great. He is also a top vision person, and says that vision, neurology and physical medicine all overlap. He asks me, "Can he see? Do we know if he can see?" I tell him about all the eye doctors and the varying opinions. He tells me to end this once and for all and get a visual evoke potential (VEP) done on Andy right away. I agree. I tell him, "no one has ever said this to me, ever".  I am so happy I went through with an umpteenth opinion.

Now I'm scared of what a VEP can find, one of the majors being cancer that causes a lazy eye. But I am ready to get this scheduled right away, and fear of the unknown won't stop me. The PMR also suggested going ahead and getting the custom made shoes for his afos, and also getting new spinal and hip xrays. I agree with everything.

It is nice to finally be talking to a doctor that seems to be on the same page as me. He is also very available for me to reach him. I am very thankful his school PT told me about him, and that I decided to listen.

Stay strong-

 Amy

Excited words

I was feeding Andy today, and he got really excited and tried so hard and said "mama, ungee". I took it as  "mama hungry", so I said "yes, mama hungie! Very good Andy!" I feel that saying words the way Andy can say them is okay. Him being able to pronounce the "r" sound right now is crazy, and who cares anyway? My little one is finally trying to verbally communicate with me! It's so awesome, and Gabby is so excited too. 

My husband also noted that it seems he is moving his tongue around in his mouth more. I looked and noticed it too. He's really lifting it up and shifting it around. Probably good exercises to help allow him to talk. I tried to encourage him to stick out his tongue, which he found to be funny, but wouldn't imitate. 

I also heard him on the monitor after his nap, babbling in the tune of the alphabet song. So, I ran into his room and sang the ABC song to him. He had a huge smile on his face. 

I think Andy is excited as well, to see us get so excited about his speaking. He also seems to be happy to see that we can understand him. I'm hoping that this keeps building his motivation to speak, or attempt to make sounds.

Andy attempting to communicate verbally

Andy gave me so much eye contact today. It's been getting better and better each day. He seems to really be letting me in, or wanting to connect with me more. I am just so ready to hear him, and I accept him whole-heartedly for who he is right now. I am being extremely patient, and I feel very open right now. Open and at peace with whatever is going to happen next with Andy's development.

Today, I told Andy while feeding him, "say ahhh", and he opened his mouth and in a cute baby voice said "ahhh". I loved it! It was so awesome,  just so great to hear him respond to me verbally. It had me so happy all day long. He also tried to say "ready", he made the "eee" sound for eat several times, he's saying "up" today, "mmm" sound for more, and sounded like he sang "up above world" for Twinkle, Twinkle, Little Star.

Over the last few days, I've been making some changes with myself, spiritually and mentally. I'm trying to find out more about energy and healing. I've been praying so much, and reading up on spiritual intuition, and intuitive parenting with Dr. Deb Snyder. She has some very helpful information, which I've already been putting into use to open up my heart and mind to Andy. I just really feel at peace, and feel a more open connection with Andy, by doing small things.

I hope that Andy is able to sense my full acceptance of him, and my deep love for him. I'm trying to show him love, more than anything, and not demonstrate any disappointment to him. Because I honestly feel that things are what they are, and I can't spend my days longing for more. And I can't let him feel that he isn't good enough for us. I just want him to feel so much love and acceptance, and I think he does. I really think he does.

New Expectations

I've been working more on Andy standing and playing lately. Just so he can experience the feeling of being upright. I have to be careful though, because he doesn't have protective measures for falling. He tends to fall backwards or forwards lately, the side falling seems to have vanished. He's not as floppy as he used to be with just falling any which way like a rag doll. He stands in a stronger stance.

I think he really enjoys being upright though. He stood for 20 minutes today, playing at a sand table with his cousins. It really felt like he was a part of the group, instead of off on his own. He tired, then continued to play in the sand while sitting in a chair. It was very therapeutic play.

Lately, I've been trying to work on Andy's hand-releasing skills. He doesn't easily release food into his mouth, nor does he easily release toys into containers. Realistically, there's no way he can stack blocks, or self-feed finger foods, when his releasing skills are so poor. I try to encourage him by saying "let go", and then "good job letting go of the toy", or "wow you put the toy down".

Andy just turned three, and right now, I do not expect him to be walking in a year from now. I only hope that he will be able to stand independently. I don't know if he will get crawling. It seems way to complicated for him. Walking seems like a much easier task. He stands stronger each day we practice.

Seeing him gain strength really motivates me. It also feels so much better to see him standing upright. It helps to feel that he is really three. At the same time, I feel that I have really let go of wanting Andy to hit milestones. He just isn't going to be a kid that marches to the beat of that drum.

Risperdal may be working

We have finally landed on a dose of Risperdal, and a good time frame for it. I give Andy 0.2 ml soon after he wakes up. We started at .25ml at night, went up to .50ml at night, it was way too much. He started having difficulty sleeping. We switch over to morning dosing. 0.5ml during the day was still way too much, he was just so tired all day, couldn't do therapy. We moved down to 0.25ml, and he was still a bit noticeably sleepy, wanted to give up. The nurse suggested half of the 0.25, but instead I just came down one notch to 0.2ml. It seems to be working well. He doesn't seem too tired, no sleep disturbances, and is sometimes happy and in a good mood. We hardly ever saw him happy and in a good mood for so long, too long. Around 6 months, pre-medication. Just constant inconsolable crying, and so unhappy all the time. My daughter even mentioned today "wow mom, Andy is so happy and in a good mood". Yes, he is.

Andy's Third Birthday!

Andy's third birthday was today! He had a great birthday. We had a small party for him with only the grandparents over. We will have a bigger party on his sisters birthday in a few days. All of us got him toys that he really enjoys, that are developmentally appropriate and that are therapeutic.

I loved how the day went, because Andy wasn't overwhelmed or overstimulated at all. He really enjoyed the day, and I had quality time with him. He went to bed on time, and fell asleep right away. The day was such a success, and I was gushing with happiness the whole time.

Changing the Risperdal regimen

I spoke with Andy's nurse today about my concerns that the Risperdal given before bed may be giving him insomnia. She responded that it usually helps children sleep better, but one of Risperdal's side effects is "difficulty sleeping". It is very uncharacteristic of Andy to wake in the night, crying and unable to return to sleep. This has happened five nights over the last three and a half weeks.

We are going to switch him to getting a.25ml dose in the morning, instead of before bed. We'll see how this goes, before weaning him off to discontinue the Risperdal. She informed me that in order to wean from Risperdal, we will first have to step down to the lowest dose. He is currently only at .50ml, so we will return to the .25ml this weekend. Then she wants him to receive it for four days at .25ml, then we can stop the meds all together.

I am willing to try the morning doses through the weekend, but if things still seem off for him, we will just discontinue. Not sure if we will try another medication for him or not. I guess it depends on whether he goes back to seriously ridiculous meltdowns and crying or not.

In terms of his mobility, he has made minor improvements. He is standing a little better, and going from sit to stand slightly better. He is scooting around a little bit. He occasionally makes new sounds, but not really. He was saying "wow" a lot when he was excited yesterday at his PT visit. His sister was making him laugh, and he was excited and screeches out "woooooww". He was also shaking his head a lot at the visit, whenever the PT asked him to do something, but I don't know if he was trying to tell her "no" or not.

Confused about Risperdal

We are still giving Andy Risperdal. So far in the three weeks of the meds, he has had insomnia twice. During the 2nd week of meds, he almost seemed to be getting worse. However, his third week now, he seems to be much better. We are confused. Whether to keep him on it, is he really benefitting from it, we are not sure.

My main goal is to have his behavior out of the meltdowns-all-day realm in time for school in the fall. I guess if the medication seems to be doing that, we'll keep moving forward with it. If we start to see a lot of insomnia, or daytime crankiness, then we'll reconsider. I'll have to keep a close eye over the next couple of weeks.

Concerns about Risperdal

Andy is on day three of increasing his dose of Risperdal to 0.50 ml at bedtime. I am concerned that he could be getting insomnia from it. It doesn't happen every single night, but it has happened twice in the last four days. He wakes up at 4am and cries until 5 or 6am. I try to calm him, but can't. He is unable to get back to sleep, so I lie awake and worry and wonder if he should be taken off of this medication. He is not the type that will sleep with me in my bed, and does not like to cuddle. So, all I can do is leave him in his crib crying.

It is unusual for Andy to wake in the night at all. He's usually out for the full 12 hours. We also think that he isn't really showing any better behavior just yet. If anything he's showing more crankiness, and more frequent outbursts. I'll be calling the neuro office on Monday with my concerns, and I'll be awaiting their return call as they are always really busy.

His pharmacy told me that I cannot just discontinue the drug. They said he has to be titrated off of it, or weaned off of it. I've also read this online from adults who've been taking it. Some of them reported that after being on the drug for two weeks, they started to feel like they had a hangover during the day. Or that they were hit by a truck. I sure don't want Andy feeling this way. Others reported they had no side effects at all. It's very confusing. We desperately want to help him, and our family, but we don't want to make matters worse.

This stinks.

Tough time with Inconsolable crying

Andrew has been on Risperidal for about 10 days now. I don't know if much has changed. He is still sleeping soundly at night, thank God. However, his crying fits have kicked up a notch again in the last few days. He seems to get bored and start crying out of control. Today they started with me setting him down just to use the bathroom. I put toys all around him and walked away. I asked my daughter to play with him, but she wanted nothing to do with him because he was crying. I could hear him crashing all around the room and screaming. I thought next time he's going in his crib, and that's it. He just doesn't last even one minute with me not around.

At school, he'll do okay with others around. I think he just doesn't want to be alone. But there are times when I can leave him playing in a room with toys he's interested in, and I can sneak into the kitchen to make dinner. There are other times when he screams the whole time I've left him alone to make dinner. We try music, and DVDs, and toys, it's all hit or miss. The medication he is taking is before bed, and I am wondering now if he needs to also be on a different medication for during the day.

I am totally losing it here, and honestly don't know what to do with him right now to keep him happy. I have to be able to clean the house and make meals, I can't constantly be right at his side. Yesterday, on our way home from the doctor he screamed the entire 10 minute ride home. It was so awful. When we get inside, I put him straight in his crib when he is like this. He continues to have a fit for 10-20 minutes in his crib, then either falls asleep or starts to calm down. When I bring him out, if he starts up again, I put him back in his crib.

It's just been terrible, and I feel that this whole parenting experience with him has just been pure torture. It affects me and my husband so negatively, its a miracle that we are holding it together. I got out on Saturday for a few hours, but my husband told me that Andy cried nearly the whole time. It just really makes me angry and upset that this has to be my parenting experience. I am very grateful for my typical daughter, however, Andy exhausts all my energy so there is nothing left for my daughter.

I feel that this fall will bring a whole new chapter for our family with Andy starting preschool for several hours a day. I can hardly wait for it to start.

Gross motor progression?

Is it finally time for gross motor progression? I haven't seen anything with speech for a week or more, so I started doubting the wonders of DHA/fish oil. By the way, his third neurologist told me, after I asked "what dosage of DHA do you recommend?", he replied, "I don't use that".

Moving forward, today Andy is responding to me telling him, "hands on" to get him to hold on to something in order to steady himself. His new private PT has been telling him these words "hands on" before he attempts to stand up. He was sitting on my lap today in front of the bath tub, I told him "Andy hands on" and he grabbed the bath tub. I put my hands on his hips and said "stand up", and he stood up without my assistance. I then grabbed a step stool that was a little higher for him to sit on, and we did it again. He put his hands up and held on, but needed a small boost to stand up. When we did it again, he was clearly tired, and needed the same boost, but was pulling himself up.

It would be so great to finally see some progression in the gross motor area. I would love for him to be able to talk, because I think it is the ultimate in the area of cognition. However, gross motor is really needed for him to be more functional at home and school right now.

I used to think that gross motor progression was vital to Andy learning how to speak, but I don't think it is. I've seen a few children now, who are able to speak, but cannot move around. So, it seems that certain children have the speech area of their brain turned on, and others don't. I am hoping that Andy's gross motor is starting to make better connections. Maybe this is why speech progression has stopped, because his brain is about to make some gross motor progression. I was bummed to see his new sounds stopping, but maybe it is because some new movements are occurring.

Agenesis of Corpus Callosum and behavioral issues

Andrew saw a third opinion neurologist today. I felt that we didn't get much of anything out of the previous two neurologists, and I was right. His PMR doc was also failing us, by telling me to "just use calming techniques" for my sons daily inconsolable crying fits. My pediatrician told me that she wanted a neurologists opinion before administering a medication to help calm him.

The neurologist reviewed my sons MRI images and said, "Your son has agenesis of the corpus callosum. This causes him to have a chemical imbalance in his brain, which causes meltdowns, and he tries to hurt himself right? By banging his head?" I said, "yes". He says, "no one has told you to medicate for this?" I say, " I was given calming techniques to use". He said, "calming techniques will not work with these types of kids, they need to be medicated. Does this happen every day?" I answer, "not only every day, but sometimes all day long". And then I want to cry, but I didn't, I just got teary-eyed and angry. Angry that we've had to put up with this for so long, but now we are finally getting help. He asked if I'd be willing to mess around with different dosages and possibly have to try different medications, and I agreed. I told him we are at the end of our rope.

Andy's scooting around!

Andy demonstrated a few belly scoots pulling with his arms a couple months ago, but then we didn't see them again for a while. Any time I'd interfere, and try to push his feet along, it seemed to ruin his scooting. So, I thought I'd leave him alone, and place toys out of his reach, then I'd leave the room and he'd move for them. He then scooted around really well at my MIL house on St. Patty's day, but then he wouldn't do it again for a whole month! I was so bummed, I thought for sure he'd start taking off.

Now he seems to be okay with scooting in front of me with some coaxing, maybe because he knows I'm not going to help him. Maybe he also understands now my verbal cues for trying to get him to move towards me, "come on Andy, come get the toy". I really don't think he understood what I wanted him to do before. Mostly, Andy rolls as much as he can, before he has to scoot to the toy. It's obviously much easier for him to mostly roll, then finish up with the belly scooting. So, I really really hope we will start seeing his scooting around more consistently now.

Before bed I was letting Andy explore his room. He was really into it. He was moving all around, little by little, and getting into whatever he could. It was so awesome to watch him explore whatever he wanted to. He wasn't happy to be told it was time for bed, I think he wanted to keep looking around. I told him "you can crawl around your room tomorrow okay", but he still cried in protest as I laid him in his crib.

More sounds

I can't believe it, but Andy has been making a few more sounds over the last two days. Hearing him speak is still rare, but just hearing new sounds is exciting. Yesterday, he said "Ay", after hearing "the letter A" on a DVD. Today, "up" returned after he heard a toy saying "up and down", he tried to say "story"after hearing the word, "break" after hearing me and his sister say it, and "way" after hearing me recite a rhyme.  I'll take imitation of sounds any day.

I am still giving him the Omega-3 oils with 230mg DHA in them daily, mixed with yogurt or ice cream. He is pivoting more and more each day. Hopefully, the combination of DHA and him moving around more are stimulating his brain! I find myself excited to wake up and get him going to see what he will be doing today! I also have a whole lot of positive thinking going on, and I am trying not to think negative thoughts at all. I am trying to just believe in him, and feel in my heart that he is going to show me great things every day.