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.

Alayna's Angels

Crazy Chi-Omega's from Illinois State University.

We couldn't fit everyone in one photo, so here is the left side of the room too! Didn't want to leave anyone out.

Another group shot of some of Alayna's Angels!

Last weekend my Chi Omega sorority sisters held a fundraiser for Alayna in downtown Chicago. Oh, what a blast! Many of them still live in the city or the suburbs and with families and professions it was difficult for them to come back in November for the Quad City Fundraiser/Trivia Night. So, they decided they wanted to have their own fundraiser. They called themselves "Alayna's Angels" and they truly are just that. Dana and I feel so blessed to have such a supportive network of friends. I think I counted at least 26 Chi Omega's in attendance, plus their spouses, significant others, and friends. Some of them I hadn't seen since graduation day at ISU back in May 1995! And some of them were younger than me and I had never met them before. But they were all there to support Alayna and they expressed this repetitively through their kind words and gracious hearts.

The evening was filled with socializing, a silent auction, a raffle, and a 50/50 drawing. Many of us had our cameras and it was like we were back in college for a night. And for awhile many of us pretended that we didn't have any kids at all! We all enjoyed ourselves so much. I personally enjoyed just seeing everyone and catching up with what they are doing. And oh my goodness, between many of us we have tons of kids! We have lots of "little Chi-O's" coming up!

A special THANK YOU goes out to the main organizers of the benefit: Beata, Diana, Missi, and Kara. You all out-did yourselves and went above and beyond expectations. It means so much for you to have taken time out of your busy lives to plan such a special event to honor Alayna. And a huge THANK YOU to everyone who attended and made it a success. You are all very special people.

2nd Birthday Photos, New Ear Tube & Sleep Issues

2nd Birthday pictures taken at pictureme! at Walmart!

Alayna is fascinated with her left hand lately! She can be soooo sweet.

At most she'd give us is a 1/2 smile while looking at the camera. She'd smile, but never looking at the same time.
Of course we used the bumbo seat to help her sit and it worked nice.
So precious and of course more hands in the mouth!

Walmart Photos

I'm so glad to have gotten photos of Alayna sitting up like a big girl and not laying down. I have been putting off her 2nd birthday photos and I finally just decided to go and do it. Alayna was a happy girl most of the time, but towards the end she was getting tuckered out. The lady was able to get some good shots and I am pleased. The most challenging thing was keeping Alayna's hands out of her mouth and having her sit still. She loves to move around in the bumbo and push back using her legs. I knew getting her to smile was going to be tough. She'd smile, but she would never look at the camera at the same time. She'd always look down or look to the side. Stinker! But she did good considering this morning she had a new tube put in her ear.

New Tube & ABR Hearing Test

It was an early morning for us here at the DeKeyrel household. We had to be in Iowa City by 7:15 am this morning. Alayna was the number 2 patient on the surgical list to get new tubes in her ears and have an ABR test at the same time. Her left tube needed to be replaced because it was clogged and had fallen out. Her right tube was fine so the doctor decided to leave it. And the most wonderful news was that her ABR showed normal hearing results. This is the second ABR that she has had and both results were the same! I'm thrilled and I doubt that she has to have another one for quite a long time. Alayna did well with the procedure, but the most difficult part for her is coming out of the anesthesia. She gets extremely irritable and cries a lot. And she refuses to open her eyes. This lasted for about 30 minutes in the recovery room and I was about to pull my hair out. I felt so bad for her because I think the anesthetic must make the kids feel funny and uncertain. But she eventually snapped out of it, ate her bottle, and off we went! Good job Alayna. Oh, and we got a weight on her...22 pounds. Thankfully she isn't very big because we do a lot of carrying her.

Sleep Issues

We are having sleep issues again. It seems like this goes in cycles for us. Alayna will have about 3 bad months and then maybe a good one and repeat this cycle. It's tough on us when we don't get our rest. And it isn't good for Alayna either. We've tried everything that we can possibly think of. This is a popular topic of discussion on our support group website and I know that many of us 1p36 parents deal with sleep issues. So many of the kids have sleep disturbances in the middle of the night. We wonder why research hasn't documented this as a possible characteristic of the syndrome. I really pray that Alayna grows out of it.

Lately, she is awake for at least an hour at a time in the very early morning. And when she wakes up she usually is crying very loudly to the point that I can hear her over a box fan in the hallway. It's not enjoyable at all. I resort to replacing her pacifier about 2-3 times and if that doesn't work I give up, close her door, and turn the monitor off. I'm sorry Alayna, but mommy needs her sleep in order to function. Melatonin is a natural supplement that can be bought over the counter and is supposed to help with sleep. I purchased some at Walmart and we are trying it. For some kids it works and for some it doesn't. I didn't see much difference the first night, but the second night she slept from 8:45pm-6:45am! Yahoo!!!! But then the next night was torture again. So, I have no conclusion at this point. She is sending me mixed messages!

Annual IFSP Review - Early
Intervention

Last Monday we had Alayna's yearly IFSP review at the CTC with her EI coordinator and therapists. They are all so pleased with how much she has come along in just the last 6 months. She is interacting with toys and is wanting to know how they work. She is starting to bear weight more in her legs and initiate standing from a sitting position on our knee. Her stander seems to be really helping with this and she is adapting well to it. She now gets through at least 45 minutes of therapy when it used to be only a few minutes before she'd get mad and fussy. Eating is going good and she is taking more foods with texture. Her EI coordinator gave us some information to read regarding schooling for her next January. It is unbelievable that it is time to start discussing this already. But when she turns 3 she will graduate from EI and be responsibility of the Rockridge School District. We are thinking about options and in May we will have a 6 month review and likely be closer to a decision. Overall, we are happy with Alayna's continual progress and we are committed to making sure she gets the necessary services to keep moving forward.

Alayna In Her Stander

Alayna will stand in the stander anywhere from 10-25 minutes at a time. She is doing well and is adjusting faster than I thought. As long as she has a toy, she is happy!

Here is her favorite cloth book again. She loves eating it! The tray to the stander is a Godsend.

Alayna had to go back today to get her AFO's adjusted and cut back on the foot part. They were too closed around the top of her foot and that made it extremely difficult for us to get them on her. They are much better now and this is the first time she stood in the stander with her AFO's on. She didn't mind them at all.

I haven't put her standing completely vertical yet. I've always left her at a slight angle by recommendation from her PT. Usually she tries to sneak her knees up out of the stander, but since her AFO's were on she didn't do this. Maybe they won't allow her to. That would be wonderful because her PT was going to try some knee guards on Monday at her PT session. Maybe she won't need them after all.

Oh, it's so hard getting all of them together at the same time for just one photo! Someone always has to be the clown! Tonight it was Drake. They all still do so well with Alayna and truly love her. Lately, Douglas has been asking me if Alayna is a baby. I don't know why he asks that. I tell him, no she isn't really a baby, she is a toddler. He looks at me funny and I just tell him that she has a lot of baby qualities which is nice! He just smiles....
They are looking forward to a week from now when Spring Break starts. Their Grandpa and Grandma DeKeyrel are blessing them with a vacation to Disney World. Alayna is not old enough to go, so she is staying back home!

Not too much has been happening lately other than the normal, daily grind of work, school, house chores, ball practices, etc. Unfortunately, Alayna is going through another round of restless, early mornings. For a week now she has woke up sometime between 4am-5:30am crying. And she is loud! I can hear her over a closed bedroom door and a box fan on medium speed. It's a period of fussiness that can last anywhere from an hour to an hour and a half. I've been getting up about 5-7 times to replace the pacifier. God, I wish she could find this herself and put it back in. Oh, this task is so hard for her and I hate that it is. I think it is her teeth. Her chin has been really red and broke out lately and that is the only thing I can contribute it too. She doesn't have a cold or ear infection and she is not hungry because she eats more than I'd expect her to. She did this same thing awhile back and I pray that with time it too shall pass. I'm longing to be awoke by my alarm clock and not Alayna.

Again, thank you for reading Alayna's blog and for keeping up with her development. Honestly, things are looking up! Outings are getting a bit easier and Alayna just seems to be happier more often because of her ability to entertain herself. I hope that this summer is easier than the last one. I know that therapy sessions will still keep us busy and nap time will still be important, but I really hope that we can go to the pool more often and get outside and play. It's no fun staying inside every day and feeling cooped up. We'll just have to see!

It's Been An Eventful Month!

Alayna now enjoys sitting in her tub ring and chewing on Douglas's foam tub toys!

Alayna is trying on her new AFO's!

Very tiny AFO's for Alayna to wear while she is in her new stander.

Alayna is sitting better each month. She will sit for minutes at a time, but I'm still a bit protective and put a pillow behind her to catch her fall. A toy on her lap seems to help her balance and forces her to use her tummy muscles to straighten back up again.

Alayna playing with her v-tech car toy. She still continues to love sounds and light toys.

Double-fisted and watching the water! It thrills me that she enjoys having these toys in her mouth in hopes that someday she will be able to eat a cracker or anything else with more texture.

All clean!

Douglas begged for a picture with his little sis! He thinks taking a bath with her now is cool!

Otolaryngology Appointment in Iowa City

A few weeks ago we took Alayna to Iowa City hoping that we would get a sedated ABR. Her first one showed positive results with normal hearing levels, however, they thought we should get a follow up hearing test in a year. The doctor first wanted to try the sound booth, but developmentally Alayna is nowhere ready for that. So, a sedated ABR is the best answer. When we got to the appointment, the protocol was to double check her ears for no infection or fluid so the test would be accurate. Well, low and behold her left tube was no longer in the correct place and she had fluid in both ears. So, out came the tube in the left ear. They decided to not do the test and instead Alayna has an appointment for new tubes on April 17th along with a sedated ABR that will be done in the OR at the same time. I was a bit disappointed, however, now I know why she may have had many sleepless nights and had been rubbing that ear so much. The tubes lasted for about 13 months and that is good.

Stander & AFO's

The stander is finally here and so are the AFO's!! I apologize for not having any pictures of her in it yet, but today her PT, Kim, came out to the house and did all of the necessary measurements to make sure the straps and pads were in the right spots. We also needed training on what to do and how to put her in it. It's a bit intimidating at first. So, she hasn't been in it much yet, but photos will be coming. There is a small problem with her AFO's being so fitted and tight. Our PT doesn't like them that way, so we have to make another appointment to get them adjusted. This isn't at all uncommon. I just want Alayna to be comfortable in them and learn to like them as much as she can! Right now they are too difficult to get her foot into and that does us no good. We are very excited to get her standing. For now, we are starting to do a few minutes at a time until she tolerates it longer. We are also starting at about a 45 degree angle and not completely upright until we know she is ready and can tolerate that as well. It's all about baby steps!

Other Miscellaneous Updates

Alayna has been loving bath times and sitting in her siblings old tub ring. For now it is working just fine. I put a bath sponge on the bottom so she doesn't slip around. I plan on looking for an alternative bath seat that will work for us down the road. As she grows, she won't be able to fit into this forever. Alayna has been sleeping really good (please, I hope I didn't jinx myself). I'm not sure what her problem was a few months ago, but whatever it was has seemed to pass. There is an occasional morning where I might wake up to a cry very early, but for the most part the pacifier fixes the problem. I love the light projector she got for her birthday last year from the Redlinger family and use it about every night. And she has a glow seahorse that plays music too. Love both of them! They help me buy minutes in the morning when I'm still getting ready for work.

Alayna continues to do well eating and drinking. She hasn't expanded her menu much since the last few posts. She loves any and every kind of oatmeal and will eat the entire packet on most mornings. It amazes me! Some days she eats more than others, but that is so typical of any kid. She still isn't quite ready for significant texture, but I keep trying. On average, I'd say she gets at least 15-20 ounces of fluid a day plus food.

I've been using Amlactin body cream on Alayna's legs and arms two times a day for about 2 weeks and I highly recommend it to anyone who battles bumpy skin. It hasn't completely taken the bumps away, but they are noticeably smaller and less red. I'm glad our dermatologist recommended it because so far it has been the only thing we've used and seen any results.

Alayna continues to be a joy to our family. She is a precious little girl and I enjoy holding her and hugging her. She is becoming more alert, watching me talk, grabbing at my hair, my earrings and my necklaces. Getting her to smile is much easier now and the kids are really enjoying her more too. Alayna is very sweet and we continue to say our prayers to keep her healthy and happy. May God continue to watch over her.

Oh Alayna, Alayna, Alayna!

Sleep Issues

Alayna continues to challenge us with her sleep issues. She typically sleeps only 8 hours straight at night. Lately, the problem is that she is ready for bed sometime between 7:30-8:30 pm. So, for the past month I've been awaken by her fussing in her bed around 4:30 am. She's ready to eat! At this time, I do give her the one bottle that she gets each day, along with her phenobarb, and put her back in her crib. Some early mornings however, she has to stay in bed with me because she just won't settle back down. Believe me, I'm trying to be creative in this department and try to figure out what else I can do, but I'm beginning to think that it's just her schedule right now. I hope as she gets older she will be able to hold out a bit longer in the evening and sleep longer in the morning. This is where she usually falls asleep every night...in the bean bag in the living room. Probably not a good habit, but putting her in her bed doesn't wake her.

Here she is a napping in her swing. I wouldn't mind the 8 hour sleep if she'd nap better. But again, her longest nap is usually no more than 45 minutes. But what a sweet little face.

Dermatologist Update

Alayna continues to keep us very busy and on our toes. I took Alayna to my "old, high school" dermatologist a few weeks ago. I wanted to see if she had any recommendations on how I could lessen the red bumps on her arms and legs that are otherwise known as keratosis pilaris. It's a common condition that many people battle during their early years and is most of the time hereditary. Most people have it only on the backs of their upper arms and on their thighs. Alayna has it a bit worse as hers has worked its way down on to her lower arms and lower legs. Unfortunately, there isn't a cure, but Dr. Perry did recommend a lotion called AmLactin that contains 12% lactic acid. It is a really nice, fragrance free lotion that is good for softening and smoothing skin. She gave me samples to use before buying it because it is a bit costly compared to most lotions. It is sold over the counter and depending upon the size it is between $15-$25. She said it is sold at Walgreens. I plan to buy some because I have noticed a difference. It may be a slight difference, but Alayna's legs and arms seem to be more moisturized and the bumps aren't as evident. The bumps don't bother Alayna at all and that is the good thing. Dr. Perry said another good thing is that she has never met anyone beyond the age of 20 that still battles this condition. People grow out of it and Alayna will too!

Kid Kart Update

I'm sure many of you expected that we would've had the Kid Kart by now and I wish we did. But it is still in the process of being ordered. Basically, we are trying really hard to get some assistance with the purchase of this and it takes time for these things to happen. So, I hope that I have some more official news on this item for you really soon. I'm looking forward to having it because Alayna doesn't enjoy her regular stroller very much at all. Especially not for long periods of time. I think a big part of that is it lacks support in the appropriate places, but again that is my guess.

Stander Update

I was told by Early Intervention that we'd have it by the end of February at our house. So, we are beginning the last week of February and I'm waiting for a phone call any day now! I know for a fact that it is on its way and I can't wait to put Alayna in it for the first time. Someday when she is able to stand up by herself holding onto the couch or my hands, I will cry. I long for the day she can get around this big world on her own. I have so many dreams for her. Progress can be so painfully slow, but we have to have patience. It's just really hard sometimes because I want things to happen quicker.

AFO's

Because Alayna is getting the stander, her PT recommended that she get AFO's. That is an acronym for Ankle Foot Orthosis. Alayna will need support around her ankles to make sure they stay straight and in the proper position while she learns to bear weight and stand. Many of our 1p36 kids have some type of braces and some use them when they begin to walk as well. Whatever it takes! This Thursday we go back to American Prosthetics in Moline and visit Len. He was our "helmet guy" too. He will fit Alayna for AFO's. I'm not sure what process that entails, but I'll let you know how it goes. I'm excited about it because even though it is a baby step, it is one step closer to that goal of getting her to stand. While we are there I might as well ask him how he thinks her head looks. She hasn't wore the helmet for a very long time and I'm happy with the shape of her head, but if he thinks we can get more of a positive result I'd be willing to consider the possibility of putting it back on her.

PT, OT, Speech at the CTC

Because therapy at the CTC is going so well (Alayna's tolerating the entire sessions) we've decided to add an additional OT/ST session during one of the usual "off" weeks that we normally wouldn't go. The speech and occupational therapists will see Alayna at the same time and work with her. As she continues to gain strength and progress, eventually we will separate the two therapies. But until then, it's beneficial that they work together. The other sessions throughout the month are devoted to just PT. Working with Alayna at home is the key and we continue to do what is recommended by all of the therapists. It is hard work on our part because we want to remember everything and not miss doing something and it is hard work on Alayna's part because it just is. Right now Alayna is really enjoying sitting in her bumbo playing with her toys. She loves turning the pages of her V-Tech musical book.

Feeding Ideas & Issues & Drinking Milk

Alayna is doing fine with eating solid foods. She still has to have soft-textured things like yogurt, pudding, and oatmeal. We try to introduce texture any way that we can. I have resorted to giving her vegetables still by baby food. I add crushed up graham crackers to it to make it thicker and give it a little texture. She doesn't do well with diced veggies yet. We have found that she likes banana-nut Cheerios, so we put them in a bag and run the rolling pin over them to crush them up a bit. I add whole milk to them and occasionally will warm them in the microwave and she loves them! I can't wait for the day that she wants a McDonald's cheeseburger or chicken nuggets with the other kids!

Because Alayna has BM issues, she has been on Myralax, a stool softener, for quite awhile. To assist with this matter, I've been feeding her Activia yogurt. She loves yogurt and it seems to be helping. Some other 1p36 parents have mentioned the use of probiotics to help with digestive issues. I want to look into this because it is a natural way to combat this problem rather than keep her on Myralax. Parents are reporting success with it and it is sold in health food/natural stores. I will keep you posted on this.

We've also resorted to putting Alayna back on a small dose of Prevacid. For awhile after she had been drinking whole milk we noticed she was spitting up more often than normal. It definitely seems to have helped. I just never know what to contribute things to. During the time she was spitting up she also had a cold. So was it the cold making her spit up or the milk? I don't know! It's a guessing game. But the Prevacid isn't hurting her, so we'll stick with it for awhile. She has never been officially diagnosed with reflux. She is doing so well drinking out of her cup and she enjoys it. It's been a challenge because if she sees her cup she wants it and doesn't want to eat her meal. So, I have to hide it sometimes. This gives us a good opportunity to sign "milk", "more" and "eat" because she really knows what she wants. Right now she puts her hands up by her eyes and covers her mouth when she doesn't want food and she wants the milk. We will work on signs, it is just going to take some time for understanding. At least we are learning to read the signs that she is doing herself!

Overall Progress

This is the toughest area for us to deal with as parents. Because we are with Alayna every day we don't necessarily see the progress she is making. It is very small progress and it just isn't obvious to us all of the time. However, many people lately haven't seen Alayna for awhile and when they do they comment on how alert she is with her surroundings, how straight she is when she is sitting up, and how well she looks around, watches their faces, and plays with toys. Her therapists tell me this every time too, so it is very reassuring to hear these comments. It's hard to describe how much these comments mean to us. Thank you for observing our sweet little girl and for realizing that she is coming right along! We are doing everything that we possibly know we can do for her. And we are always open to new ideas.

Outings

As difficult it may be for me to take Alayna out to things like the kids ball games and even to the store, I know that I need to do it anyway. Alayna needs to be put in those situations and socialized because she can't stay at home the rest of her life. She'll be going to school next year!Taking her to things is not an easy task and it is a challenge to get her to cooperate and be in a good mood the entire time. And when she's not that's when I begin to lose patience and I get just as frustrated as she does. We always try and take toys as distractions and her blanket. This past weekend I hesitated to take her to Drake's basketball game for an hour because of the "fit" she threw two weeks ago. It didn't go very well at all. She hated the stroller and I couldn't do anything to make her happy. So I had to get creative as we often have to for Alayna. I took her bumbo seat and sat it in between the bleachers. She used the bleachers bench as her "table" and she played with her toys for nearly 45 of the 60 minutes! Yeah! She was happy and I was happy! It was a good day. I'll definitely do this again. Forget the stroller. I hope she likes the Kid Kart better.

I have neglected taking pictures of any of the kids lately. OOPS! We've been so busy. I hope to take some in the near future and share them with you.