Summer is Almost Here!

My brother, Douglas, loves me! And look at the dirt on his pants...ugh!

Stander time!

Look at that gorgeous curly hair! I love it, but it is so tough to manage right now. Alayna still wears a pony tail nearly every day. Tangles and more tangles.

Our pretty little princess wearing her Lexi's old teletubbies p.j.'s. Yes, I kept tons of stuff and it is wonderful.

Love the smiles!

Summer is almost here and we are counting the number of school days left! We are all very ready for a break from the alarm clocks and the normal routine. Alayna continues to grow and make advancements. And even though they may be small strides, they are huge to us.

This girl can eat!

First of all, boy can Alayna eat! She has made huge progress in this area and I'm thrilled. Here is a sample daily menu for Alayna: breakfast - entire bowl of oatmeal and a yogurt with milk or juice, lunch - vegetable, pudding and maybe 1/2 banana with milk or juice, snack - yogurt with graham crackers and finally dinner - vegetable, fruit parfait cup, 1/2 banana and milk or juice. Alayna's variety of what she eats is still pretty limited, but I was so excited to learn that she will finally take a bite out of a banana and chew it. It doesn't pop right back out anymore! She is doing a good job trying to maneuver it around with her tongue and keep it in her mouth. Last weekend she took a few bites of a grilled cheese and again I was so excited that I had to text Dana to tell him. Since she has been eating more she has decreased her intake on liquids and isn't as fond of her milk as she used to be. She'd rather have a bite of something! Her mouth is usually always open like a little bird waiting for her food. Alayna also enjoys eating banana-nut cheerios for breakfast. However, we have to put them in a baggie and crush them with a rolling pin. She can't eat them quite yet whole without gagging. We also use graham crackers a lot and smash them too. We add them to yogurt and baby food (fruits) to help thicken them and give them a different taste. She loves it!

Neurology Update

Dana took Alayna to Iowa City last week for a neurology check up. She hasn't had an seizures for quite a long time that we've witnessed anyway. The doctor said everything looked good and she recommended Alayna keep the same dosage of 45 mg of phenobarbital per day. We go back in 6-9 months. So, no news is good news!

Sitting and Standing

Alayna continues to stand in her stander each day for 30 minutes at a time. I admit that sometimes it is difficult during the work week and she misses her "standing" sessions once in a while. There is only so much time in a given evening and with 3 other very active, busy children our schedules are crazy. Alayna's sitting is getting so much better! She can initiate sitting straight up by herself and give those postural muscles a workout. She is also recognizing when she is falling backwards because she will laugh or smile and her expression says "oh, yeah I forgot to put my hand down." But she is definitely doing much better balancing on her own and playing with a few toys for longer periods of time. We are getting there!

Sleep and Teeth

Alayna went through another bad spell of sleeping awhile back. It was a bit rough right after spring break, but since then it has been pretty good. However, just in the past few days she has been waking up around 3-4 am crying. Poor thing. I do think it is her teeth again. The doctor told me they are like wisdom teeth and come up and then go back down. I put orajel on her gums last night, but the thing is you have to be quick and completely awake and on cue to do this. And at 3:30 am I was not! You see, she got me last night and bit my finger and when she clamps down she doesn't let go. Remember, she has no clue she is biting anyone. It's just an instinct to clamp down. And so, it turned into a waiting game of when is Alayna going to give me my finger back? Oh, I thought I was going to wake the entire house. It hurt and it still does today! Once I gave her some motrin and layed down with her on Alexis's bed, she relaxed and stopped crying. Thankfully we were only up an hour and both back in our beds by 4:30 am. Tonight she gets the motrin BEFORE bed!

The Untold Story

Alayna in the stroller at the ball diamond. She still does pretty well sitting in this particular stroller. I am glad we have the new Kid Kart, but my fear is taking it someplace and her not napping in it as well as she does this. She likes to wiggle around and sometimes turn to her side. I just don't see that possible for the Kid Kart. It's pretty restrictive.

Alayna sitting in her new wheels! I am still trying to get used to it before I get brave enough to take it out and about. I forget how to make things collapse.

It is very supportive for her back and nearly every other place on her little body. It straps around her waist and over her chest. It has feet restraints to give her extra support too. The seat can be removed and turned around to face the "pusher." It can also be removed and put on a spare set of wheels that we can use for indoor purposes. That's nice because we know the big wheels are bound to get dirty outside.

I'm really glad it has a tray that we can slide on if we want to. It's all about entertainment when we go places and hopefully this will help. It will also be good for when she goes to school.

Alayna standing in her stander again! I must say that having all of this equipment is great, but very overwhelming both emotionally for Dana and I and physically.

Playing patty-cake with Grandma Diana and loving every minute of the attention. Sometimes keeping Alayna happy is a huge challenge and it sucks every ounce of energy out of you.

Alayna sitting in the bumbo at the ball diamond. We have tons of games this summer, so she better get used to going!
She is a bit squinty because of the sun, but not terrible. I remember when the sun would make her sneeze and trigger her gag reflex and she'd throw up. Thank God those days are over. I do have wrap around sun glasses, but my guess is she won't keep them on anyway. I'll give them a try though.

The Kid Kart is Here!

We are very excited to say that the Kid Kart is finally here. It's probably going to be Alayna's way of mobility for awhile until that special time when she will someday take steps and walk. Even though we carry her most places still, it is nice to have. It sits high up and can be pulled up to a table when a stroller can't do that. It is very supportive and is therapy in itself. Thank you again to everyone who donated to her fundraiser. We used those funds to help pay for this. We really appreciate it.

The Untold Story

I feel compelled again to type another heart to heart for all of the blog readers. I'm going to call it the untold story. It's those happenings or feelings that we parents of special needs children deal with on a daily basis. It's those things that unless you have a special needs child you just don't quite understand completely. It's those things that twist your heart into knots. They most of the time are words that are never spoken out loud or actions that are not seen by others. They may simply be emotions that are not quite visible to others or thoughts that are constantly running through our minds. Sometimes they tend to take over our thinking and literally drive us crazy. And yes, I admit it, sometimes I wonder if I'm going crazy.

I've said it before. Raising Alayna has been the biggest challenge bestowed upon me in this 35 years I've been alive. I sure wish I could say for a fact that it's going to get easier, but I just don't know that. I worry ALOT. I worry about if there will come a day where I can no longer provide proper care for my own child. I worry if there will come a day that I won't be able to handle her or understand her. I know there are some of my 1p36 families feeling the same way and going through these issues right at this very moment. I worry about the future. I worry about school since her 3rd birthday is on the horizon and where the correct placement will be. I worry about how she'll get there. I worry about her coming in contact with more germs and viruses and becoming sick again. I wonder if she'll ever walk. I wonder if she'll ever speak. I wonder how other children will accept her. I wonder...I worry...I wonder...I worry. Way more than I do with my other three children.

I've come face to face with some difficult issues just in the past few weeks. One has to do with the fact that my three older kids love "little" kids and love playing with them. I watch them interact with typical children that are Alayna's age and I see their faces light up. I watch them chase each other, laugh, hug, and play. This is part of the untold story. I have to deal with the fact that Alayna is not the typical interactive 2-year old that my children would love to play with. The little two-year old that I envisioned my kids to have. It's heart-wrenching. The Kid Kart is another issue for the entire family. While it is beneficial, it is also very "medical" looking. Alexis made this comment to me: "Mom, you aren't going to take her to the game in that are you? Everyone will look." It broke my heart. Again, it's another part of the untold story that we must deal with.

Another issue our little family of 6 is dealing with is the emotional strain put upon everyone. Unfortunately, this includes our 3 older children. Our families "fuses" seems to be shorter, tempers are more likely to fly, and tension tends to build very easily in the walls of our home. There seem to be even higher expectations of our older 3 children than ever before. An overwhelming amount of energy is spent caring for Alayna's needs and even though we don't mean to, we can easily overlook the needs of our other children. It's not right, but in this situation is it too easy to do. Over the last few years, the dynamics of what we knew as a typical family have done a 180 degree turn and continual adjustments have to be made. And that is one of the more difficult challenges we continue to face. I just hope that in the end, our older children will understand what our family situation was and how we tried to do the best we could.

Alayna is still at the developmental stage that her care is very demanding both physically and emotionally. As an educator, summer time is usually a time of relief from work and a time to relax and enjoy. However, I'm dealing with emotions of feeling strapped to the house and more "tied down" AGAIN. I was spoiled by my first three children because when they all were 2 years old we were able to go and do whatever our hearts desired. Realizing that this part of it isn't getting any easier with Alayna is emotional for me.

We love Alayna very much. There is no doubt in that. But these are true emotions and feelings that come along with the territory. It isn't easy and I sure wish it was. It's tiring and sometimes my brain just seems fried. And I'll admit that there are days where I don't want to do it anymore. I want to quit and run away. Somehow though I strum up enough energy to keep going. I have to for Alayna. I have no choice. God gave me no choice.