Great Day

Today was Saturday. It was a wonderful Saturday.

It started like any other Saturday with Ayden Jane waking me up to ask if I could turn on cartoons for her to watch so she could cuddle up in bed for a bit before breakfast. (she still gets up early...) By 7:30 or 8 we were headed out to the kitchen and had a nice breakfast.

After breakfast Ayden Jane played and I cleaned up quite a bit and then we ran some errands. Pretty typical Saturday so far. When we got home around 12 I was getting ready to fix lunch and the neighbor kids came to see if Ayden Jane could come out and play with them. Of she went - who needs lunch?? They played hard for about an hour riding bikes and power wings and skate boards and trampolining....

By 1:00 I had to call Ayden Jane in so she could get some lunch before we headed to her soccer game. Her friends were sad to see her go and asking if she could play tomorrow. So sweet.

She played her first soccer game of the spring season and loved it. Her coaches are amazing and 100 percent positive!! It is wonderful. Last fall she was on the team, but I'm not sure you could say she played soccer. She was sort of overwhelmed by all the activity and people... she watched and tried to ask questions more than she played. Today she just looked like a typical girl doing her best. She ran hard and got in the mix quite a bit. Late in the game she played defense and really got the hang of positioning herself and staying ready. She backed up her team mates and stepped up to kick the ball when needed. Not saying she always hit the mark, but she just understood and processed the game at game speed. It was wonderful to watch.

While on the sideline I was talking to another parent and she was glad to meet 'Ayden Jane's mom' because her daughter had come home from the first practice and told her she made a new friend named Ayden Jane.

After an hour and a half on the soccer field between warm-up and game Ayden Jane was not ready to leave until she managed another 45 minutes on the playground! I think she missed the decent weather and was trying to make up for it all in one day.

I had promised her chik fil a for supper so we headed there next. She drank her cup of water with no problems and made more new friends in the play place. Mckenna and I chatted and I caught up on some email and things on my phone so she played a long time again.

So by the end of a very busy day, we had 3 meals, no snacks, tons of activity and piles and piles of fun. Maybe this will be our new Saturday routine! Oh how I hope spring is right around the corner!!

IEP meeting

A couple weeks ago I had Ayden Jane's annual review for her IEP. She has an IEP mainly so that she can receive OT services. She still struggles with handwriting and generally getting her thoughts down on paper... so OT is extremely necessary.  It has been a bit of a struggle that she is on her 3rd OT in a year...  She likes OT, works really hard but misses Mrs. S who she had consistently early on.

Anyway, the meeting was to review how first grade is going and make plans for second grade. One of her teacher's concerns heading into second grade is that she will begin to receive grades. I have to admit I am not excited about it... Ayden Jane will not deal well with anything less than excellence but I guess she will have to learn. I am not worried that she will not learn all she needs to in second grade. I know how much she takes in but being able to respond in a way which shows just how much she knows can be an issue.  If you can take the time to chat with her it is amazing how deep her understanding of things can be...

I was very excited that one thing we can do for Ayden Jane is to put her in a "push in" classroom. This means she will remain in the regular ed classroom all day but the resource teacher will come in for 45 minutes each day. Ayden Jane will receive any help/support she needs in the regular classroom.

The comments from her regular ed teacher read: Ayden Jane is a polite, cooperative and determined student who is very well mannered. She puts forth good effort, gets along well with others and responds well to encouragement and praise. She is an average reader with good comprehension skills. She is eager to try new skills and doesn't give up easily. Ayden Jane's MAP score increased from a 157 to a 169 (40th to 45th percentile). She scored high average in vocabulary use functions and literature/informational text.

I will take that as a pretty awesome success!!

Sick

I have oh so much catching up to do. I know I will leave something out but I will try to knock things off one at a time.

First up is the illness we just finished up with Ayden Jane. If you have followed her story any length of time, you know that Ayden Jane has some crazy immune issues or at least crazy responses to illness. This winter we have given her lactoferrin to attempt to support her immune system and hopefully even correct it.

Since starting it in late September we have had our most healthy winter since she was 3 and our troubles started. Honestly, she had a short lived cold and was otherwise healthy all along. I can now say we had our first big test of her immune system last week. It was a test of how she handles viral infection, not bacterial which is typically even more of a problem but still...

Here's how it went. Saturday Ayden Jane was a WILD woman. I was tired from all the walking and playing... Saturday night she did not sleep well, I heard her several times which is odd. Sunday came and she woke up early saying her belly hurt. I was thinking she had gone so hard and skipped supper (not that uncommon) that she was just really hungry. I gave her breakfast and she fell back asleep on the sofa. I woke her for church and she seemed pretty good and wanted to go so off we went. When she came to me from children's church she was pale and slurring.... typically that means sugars are a dropping fast! We stopped to eat and she rebounded fairly well. Later she plummeted again, fell asleep again and finally.... the fever showed up!

Ayden Jane is typically not one for fevers. Or should I say, preworking immune system she was not one for fevers. She was somewhere over 103 and her belly hurt and she just wanted to sleep. After emailing with Dr. M we gave her a single stress dose of cortef,  During the night, lets just say we had to put on clean sheets several times... the poor kid. Monday came and the fever broke. She did not really eat and slept most of the day away but started to feel better. Tuesday we stayed home from school because she was afraid she would have "bathroom trouble". She did not sleep but was very calm and content to watch TV (so odd) and was uninterested in eating. By Wednesday she was back in action.

Now, that sounds totally typical right??  That's the point! Her immune system worked just like it's supposed to! For the past 4 years whenever Ayden Jane got sick we saw several things. She was hungry. She had behavior issues. She SOAKED through at night. She had trouble maintaining energy. She really struggled to recover from illness and it took weeks even months after consecutive illnesses to get her blood work and weight back on track.

I can vouch for how nasty this virus was. It knocked me on my butt for a couple days too and she handled it without a hitch. Miraculous.

Eyes

After talking with Mrs. Jen (PT) we decided it was time to take Ayden Jane to storm eye institute. She has seen an ophthalmologist closer to home here but I just want some pediatric experts to take a look and see if there is anything we need to work on.

I notice Ayden Jane struggles with depth perception a bit. It comes across as having a hard time judging where things are. Maybe that is more body awareness than vision? Who knows.

She also has a hard time making her pencil go where she wants it to.  Like if she needs to write in a box or on a line....  Again, is it the eyes?  The motor planning? Something in getting them to work together? Is there something we can do to help?

Lastly, and the one that really made Jen say make the call and check it out is that when Ayden Jane is reading and gets tired or has a hard time figuring out a word, she turns the paper counterclockwise about a quarter turn. I also notice she skips lines frequently and has a hard time finding where she is after that.

These things may all be developmental and may come on their own. Or not come....  Mostly, I just want to be sure that if vision therapy is something that could help her to get her eyes to work together better or get her eyes and hands to work together better than I want to give it a shot.

More Writing

Ayden Jane has come so very far with her ability to write. I am referring to the physical act of making the letters, being able to put letters together to make words and the ability to space things appropriately.

Watching her go through this process is making me very aware of what a miracle it is that any of us can put our ideas down on paper!

Here is what I see. At the start of first grade Ayden Jane still had to really think about how to make each letter. It was a process. She was still learning the motor patterns to most of them. I'm not sure why it was/is so hard. Obviously motor planning is not her strength but also I think vision may be a piece, having trouble multitasking and that darn body awareness - where is my hand in space? Anyway, she is finally being able to think of the letter and just know how to make it. YAY!

So, with some of her brain power being relieved from the challenge of making the letters she is more free to think in words. The words are beginning to add up to sentences. Again YAY!

The new challenge comes from her new ability to motor plan the letters quickly.  Yep, it is definitely a blessing that she can now make them more quickly, but it comes with some downfalls. Basically, she just goes quickly and although her hand knows how to make the letter, she goes quickly and loses quality now for another reason.

So what are we to do? I am thinking I want to try using a pencil grip and/or weighted pencil to see if she can get better feedback to her brain to know where she is writing and what her hand is doing. I emailed a bit with her OT as I was wanting her to work through which grip ect.  Alas, this is the last week with her current OT. So, I guess I will have to figure it out on my own or get the amazing Mrs. Jen (our PT) to help me sort it out.

He Will Handle It

I was looking at a few pictures on facebook yesterday and Ayden Jane saw a picture of a friend playing soccer. Of course, she wanted to know why L was playing and she wasn't... I answered honestly that L is very good and played on a team that traveled and trained year round and that she was far out of town playing. Of course, Ayden Jane wanted to know how she could get in on that fun.

There is a side of Ayden Jane that is quite clueless. It is absolutely a blessing that she is this way. I mean, if you saw Ayden Jane play soccer you would realize that the hopes of playing club/travel level soccer seems totally impossible. At least that was my gut reaction! She recalls her last season as a time of victory and goal scoring... Truth is she had trouble even getting a foot on the ball.

Then I started to think about it all. I did not accept the "she will nevers" from the medical folks at Ayden Jane's diagnosis. And yet, I tend to look at her limitations and have a lot of "she will nevers" jump in my brain all on their own. I have been proven so wrong by her many times as I thought she couldn't or wouldn't ____, but of course she did. Will I ever learn?

So why do I do this? I think I honestly just want to protect her just like we want to protect all our kids. I have that darn diagnosis in the back of my head no matter how hard I try to shake it. I have heard all about how it is harder for her to build lean muscle. I know that her processing speed is a step slower. I know how uphill the battle would be to keep up with gifted athletes. I know that it is a competitive world and that as such it is not all warm and fuzzy. 

For now I have put the soccer thing on hold as I told her to play on that team she would have to give up swim team and horses. I told her if she plays with the soccer team she did in the fall then she can do it all. Thankfully she is not interested in giving up anything else. She wants to do it all.  

I don't know if she will ever be a good soccer player or even just a decent enough one to make the team she wants to play on one day. I do know that if it is at all possible for determination and hard work to make it happen then it will indeed happen.

I also know that the spirit of never fearing failure (in fact, not even knowing failure is a possibility) and always being willing to work twice as hard if that's what it takes is one we all could use a dose of. Competitive sports are years away and hopefully, if Ayden Jane still has a heart to give them a try, we will find a way to make it happen. I need to trust God though, that if she wants to be a part of it and is simply not able to will herself to be good enough, He will handle it.