Tuesday, December 30, 2008

A Health Scare

I had to take Jordan into the Doctor today for testing positive for blood in his urine. He went into a clinic over the holidays for a virus that caused a fever, and since he had a problem with going to the bathroom alot, I thought it might be a bladder infection. They did some tests, his sugar came back a little high, so they sent his sample in for a full analysis. It came back positive for blood. So I got him into our regular Ped today and am so glad that it isn't anything to be too concerned about and that we can just take a watch and see approach. His weight is only at 31 pounds so we are going to see what we can do about getting him to gain some weight. But I was just glad that things are OK for now and he is OK. That is the best news possible!

Saturday, December 27, 2008

We're back in the public eye!

After many problems with people not getting invites or just not getting logged in, I have decided to make our blog public again. I didn't realize how many people really read our blog until now. I am sorry for those of you who have had so many troubles and I hope you continue to read about our family. Happy Holidays!

Friday, December 26, 2008


Here is some pictures from Christmas. We kicked off our celebration with a breakfast Christmas Eve morning at Scott's parents. Here is the kids waiting ever so patiently to open presents (well except Josh and Aliyah... they didn't care).

Here is the kids opening their tractor things. They were so excited! That is all Jordan wanted this year... a 'scoop'.

And piling on the presents. Josh was very overwhelmed and not too excited over the whole thing. But what can you expect at that age?

Here is Trevor and Jordan Christmas Morning. Notice Josh is still sleeping. He missed out on round one of present opening. And he woke up sick so I never even took pictures of his presents.. we opened them for him.

Of course once the Wii was opened... everything else was forgotten. The kids...and Scott have been playing it non-stop since then. Trevor is quite good at all the games and has beaten Scott and I every time.

We had a great Christmas, even with most of the family sick. It was a very relaxing day and we stayed home with a fire. Utah got a massive snow storm and it has taken until today to dig out. So we were kind of glad to stay home this year. We had a great Christmas and hope everyone else did too!

Tuesday, December 23, 2008

Some presents on our door.....

Since all my posts lately seemed to have been a little on the 'down' side, I thought I would do a fun post of some things that have been going on in our house.

About 9 days ago when I was headed out the door to Josh's therapy, I saw a little tiny red present on our door. I grabbed it and put in in our house without opening it and off we went. Later on we got home and Jordan saw it, so I told him to open it since I had no idea what it was. He opens it and it is a block of wood with a cow on it. I was very flabbergasted at first. What on earth is that for? About an hour later.. it dawned on me! It might be something to do with the 12 days of Christmas or something with the Nativity Scene. So I told Scott we might be getting more. Sure enough.. the next night we had a horse on our doorstep. This has gone on for the last few days, some days we got more than one present, but at least one every night. We had no idea who did it or how they were so sneaky. Scott was sure he could catch them. He would sit in our living room and look out there every 20 min or so. Then all of a sudden there would be another one and he would wonder how he didn't hear or see anyone. Today we recieved the final part of the nativity... the Star. The kids were so excited and LOVED every minute of it. I do know who did it now and I hope they know how much that brightened up our lives. We have been having some rough days lately and it was so fun to get all the presents left in secret. And since they are wooden blocks, the kids can actually touch them. I love it! So here is a couple pictures of our completed Nativity.

And finally, this is Jordan at the Dentist yesterday. We had to take him in for an emergency visit because he had a toothache. He HATES the dentist so I bribed him with a picture on the blog if he wouldn't cry. He ended up not having to have the work done yet, so he was lucky. The Dentist put him on some antibiotics to help the tooth start to get better and get us through Christmas before they do the work. They also gave him some Lortab for pain. Let me tell you... that kid is flying high. Literally!!!

I hope everyone has a very Merry Christmas!!!

My Mom and Dad's Christmas!

On sunday we gave my parents their Christmas Gifts. My sister, Chantel has gone to Ohio for Christmas and wanted to be there when they opened them. It was a great moment to see how surprised and excited they were.

I didn't actually do a whole lot with them, but Amy and Chantel spent hours getting them all put together. They used the Blurb website to design a book for each of them. My mom doesn't have time to scrapbook and just has all our baby pictures ect. in a box. So we all got pictures and 'borrowed' hers and did a book with the three of us girls, from birth to when we each got married. It was so cute and I loved how well it turned out. My mom was a little emotional when she looked through it and we were so glad to give her something priceless for all she does for us. We did another book for my Dad with all his airplane pictures in it. We had him put 100 of his favorite pictures on a CD without telling him why. Since we did it in september/october, he had no idea what was going on. My sister Amy, back in Philly, did his book. When Chantel went to visit a couple weeks ago, she brought it back with her. My dad was so surprised and excited. My brother-in-law, Luke, wrote a wonderful little tribute to him and his passion for airplanes. It is the first time I can ever remember my dad being speechless. It was so wonderful! And even though Amy and Luke couldn't be here to see them, we had our webcams on so they could watch them open it. I am so glad they liked their gifts and hopefully they both know how much we love and appreciate them.

Here is some pictures of them opening them up!

Wednesday, December 17, 2008

Josh is having a busy week!

It has been a very busy week, and it's only wednesday! And I can't even blame it on Christmas Holiday Rush either, this is just routine and some not so routine stuff going on.

First of all, Josh had his yearly E-Lap testing done on monday. In Early Intervention you meet yearly with all the therapists to go over the goals you set, see what is mastered, what needs to be worked on, ect. They also do testing to make sure the child still qualifies for the program. So the testing was on monday morning and the meeting to see how he did as well as go over everything was yesterday afternoon. So the great news is that we were able to pass off more than half of his goals. But they were goals such as sitting, rolling, crawling ect. (you have to remember he was 6 months when we did his initial eval). So that was exciting. He didn't pass off any of his feeding goals, but we did dismiss a couple of them since they don't apply to his specific situation anymore. So when his testing was all scored, he came back with an average developmental age of 10 months. The specifics were: Gross Motor 13 mo, Fine Motor 14 mo, Cognitive 10 mo, Language 8 mo, Self-Help 8 mo, and Social/Emotional 9 months. So that is why he has an average developmental age of 10 months. So now we have a better basis to go on and where we need to work on next. His biggest hurdle is the Sensory Integration Disorder. But he is making progress so we are just proud of whatever he can do.

He also had another appointment with the GI clinic today. The good news from that appt is that since his reflux seems to be getting better, we are going to take him off one med for that and see how it goes. Wish him luck! The not so good news was once again, his weight. He gained some weight since his last appt, but still didn't maintain his percentage. He was in the 4th% for weight at his Oct, appt and was in the 3rd % today. So not only did he not gain in that, but actually lost. I was thinking we were doing great since he finally hit 21 pounds. But it wasn't so good. So we are going to start a new feeding schedule and regimen with him and we'll see where it goes. He has to double his intake of his high-calorie formula and that is going to be tough. We also got appts set up today for all the tests he has to have done for the Feeding Clinic appt on Feb 4th. So we get to go down and do more testing in January. It never ends! He was very traumatized today because he had to have blood drawn again. It was not pretty. I felt so awful when we were done today. It's hard to believe how emotionally draining these days are getting.

So that is our newest news on little Josh. He gets two whole weeks with a break from doctor appts, tests, therapy ect. I think it will be nice for all of us. All the presents he is getting for Christmas from Santa and my family are things that will help with his sensory delays. So that should be fun to have some new things that will do double duty. He sure deserves some fun after all the hard work he does.

Since it is Christmas I just wanted to thank everyone for the love, support, concern for our family and Josh. We appreciate all the help we get, especially babysitting (thanks Mom, Chan and Lorina!). We love our family very much and wish everyone a very Merry Christmas!

Thursday, December 11, 2008

Just Playing Around

Today I watched my good friend Lorina's kids. We have kids the same age, so it makes it nice. Roman and Jordan have been playing for well over a year on a regular basis. They were both born in March of 2004. Maely is their youngest, she was born on May 1st, one month before Josh. So it works out well while our older children are at school. I decided to take some pictures today of the kids, since they had such a good time.

This is Josh and Maely playing with one of our toys you push around. Josh hasn't mastered that, but sure thought it was exciting she could push it around.

Another shot of the kids playing together. They play together in Nursery as well.

This is Roman and Jordan playing and watching a movie. It's their thing to do.

While I was taking pictures, I decided to get one of our funny looking tree. If you can't tell, the bottom half is void of any decorations or tinsel... anything. It's very bare. I am so glad we have a pre-lit tree, since Josh can touch but can't pull the lights off. Hopefully next year we will have a fully decorated tree!

Thursday, December 4, 2008

Tonight while Scott and I were rushing around trying to get all the kids and the dog dinner, Josh discovered a new thing. He can crawl into Rosco's kennel. It was so funny to see him in there since he is not one to try new things. He sure got a kick out of it though... and gave us a good laugh tonight!

Wednesday, December 3, 2008

We Have a DIAGNOSIS!!!!!

For those of you who have children with special needs, you probably understand how important and exciting it is to have a diagnosis for your child to explain why things are going the way they are. I have been praying for the day we can pretty much know what is wrong with Josh and the best way to handle it. He has more than one thing going on, but there has been alot of issues going on that aren't explained. So when his toe walking came out this week, I started doing some more research on it and what can cause it. When I typed in all his symptoms, one thing kept coming up. It was something I think I may have heard about, but knew nothing about it. While reading it, I found out it is diagnosed by a therapist and there is a profile you fill out to help you determine if this is what is indeed wrong with your child. So today when his OT therapist came, we started talking about these issues, and she told me she met with his PT therapist and they had come to a conclusion about a diagnosis for him. Some things that have came about the last couple weeks have made that diagnosis very apparent. So when I told her what I have come across in my research and what kept coming up as a possibiltity, she got a huge smile on her face. She told me that without a doubt, that is what he has. It's called Sensory Integration Disorder or SID for short. She said she didn't even have to do the profile to see if it was SID or not. She had us do the weighted vest, certain excersizes, ect to see how he reacted before she talked to me about it. So after this weeks developments of his toe walking, not climbing and afraid to walk on surfaces ect.. she was finally 100% sure he has SID.

So you are probably wondering what it is exactly. I sure was! Basically it means that the 5 basic senses, smell, touch, hear, taste and sight, are all integrated in your brain to give you the information of where your body is, what is going on around you, ect. SID is a neuroligical disorder that means the brain is not able to put the senses together on it's own. That is why his balance is so bad... he truly does not know where his body is in space. He won't walk on new surfaces because his body can't process it. The weighted vest gives him more sensory input to help him, but he still has to learn out to make sense of what is going on. His brain doesn't motor plan well, so that is why he can't gauge how fast his hands are going and why he seems to only have a hard, go for it all reaction to things. He can't soflty pat my face.. he slaps me cuz he can't figure out how to slow it down. So alot of his issues are making sense now! He is going to have to learn how to process the things going on around him.

This is a lifelong disorder, there is no cure, but it is manageable with therapy. It will get better eventually and as long as we are willing to help and be patient, he can do most anything. He still has other issues going on, like feeding problems and his microcephaly, but this explains alot of the rest of it... and that is so good to hear. So if you have any questions let me know. He has an appt with his Neurologist down at Primary's again next monday, so I will get an update up after that. But I think we have gotten to the bottom of all the problems he is facing now. Yea for Josh!!

Monday, December 1, 2008

Here we go again....

I wanted to give an update on Josh today. Since he was sick a couple weeks ago, and then the holidays were last week, it's been 5 weeks since his PT saw him. So today was quite the informative day. I am sure I have posted about his balance issues, his head bumps ect. from walking. I have been more concerned about his safety than anything, so paying attention to his feet hasn't been my top priority. Within a couple minutes of observing him walk today, his therapist discovered he is walking on his tippy toes with his feet pointed out more than usual. She thinks it has to do with sensory input again, but is also part of why he might have balance problems. So since he is still working on walking and we haven't even gotten beyond that, she is going to have him wear some foot braces to train his feet the right way. He will get fitted tomorrow for them and we should have them in a couple weeks. She doesn't know why he is having so much sensory problems, that is something we still haven't discovered yet. But whatever helps him is the best way to go. We had talked a few months ago about when he would be done with PT, and she basically said as soon as he was walking independantly and standing himself up, she would discharge him. Well today she told me he is having so many balance problems and still not doing some other basics like learning how to walk up stairs (with us holding his hands), doing the feet movements that he needs, ect. so we are probably looking at a few more months after all. Not that this is a big deal, I just was surprised. We first thought he would be done by the end of september, then it was halloween, then it was christmas. So it took me by surprise. I am glad he has such good therapists working with him that want him to succeed. I just need to remind myself to not have a time frame on anything at all. He just needs that extra help every step of the way.

So that is how things are going right now. It's going to be a very busy week for us, so I hope to make it to the end! LOL!! Thanks for all the love and concern!

Thursday, November 27, 2008

A Thankful Thanksgiving

I have seen how many people have been posting all month about the things they are thankful for, and I wish I had been able to get a post done about this before today. But since it is thanksgiving today, it's not too late!

I am thankful for my family most of all today. I have the best family in the world. They have been there for me this past year as we have been on a roller coaster ride with Josh. I have had all the help I needed to make it through it all. I am so grateful for a wonderful family who loves me unconditionally. I am so thankful for the acceptance my family has had with the challenges we face as well. Having a child with autism, and one with developmental delays is not easy to explain to others. I have seen other parents of kids with disabilities who have not had that acceptance from thier own family. My family is the best and loves us unconditionally. Thank you so much!!!!

Now, onto our fun family day! I didn't think to take all the pictures I wish I would have, but I got a couple good ones.

This first one is some of the family sitting around a table playing a card game. It was very odd this year to have such a small family gathering. We miss you Amy and Luke!!!!

This is Jordan being... silly. He has a cheesy smile when he is goofing off.

This is a good picture of Trevor. He is really hard sometimes to get in a picture, so I can't complain. (on a side note: trevor had a decent thanksgiving this year. He did stay away in Harrison's room during the meal, but we got him out to socialize later with the Wii)

This is Scott and Trevor playing bowling with the Wii. I was completely amazed with how well Trevor did. He has never played it before, but got the highest score on every game out of every single person there... including the adults!

This is him playing bowling. He was so funny about it. He even had a little dance that he did when he would get a strike. For those of you who don't know Trevor very well, it was a HUGE deal that he even came out to socialize at all. He usually hides away and plays alone at family parties. I was very proud of him today.

It was a great Thanksgiving and I hope everyone else had a great thanksgiving as well. I can't wait to read all your posts about the fun things you did!

Tuesday, November 25, 2008

Building a BirdHouse

Jordan waited all day long for Trevor to come home so they could build a birdhouse on our back patio. I let them out and they came back about 20 minutes later asking me to take a picture of thier birdhouse. They were so proud of themselves, if you can't tell! I was just glad they were getting along for once.

Josh's First Word!!!

Josh said his first word.. besides his 'dada' babbling! He says, 'Hi', it's so cute! I was thinking it would be longer before we heard a first word! The Speech Therapy must be doing some good. LOL! I had to take a couple pictures today to show how happy he is. He is feeling much better and back to his easy going self again. He is so fun!

Saturday, November 22, 2008

Honest kids.....

I have seen this on some other blogs and thought it would be fun to do. You ask your children the following questions and type their answer. It was very interesting here! Enjoy!

1. What is something mom always says to you?
Trevor & Jordan: Clean up your room.
2. What makes mom happy?
Jordan: No fighting.
3. What makes mom sad?
Jordan: When we don't listen.
4. How does your mom make you laugh?
Trevor: Blowing on my tummy.
5. What was your mom like as a child?
Jordan: Smaller than me.
6. How old is your mom?
Trevor: 28
7. How tall is your mom?
Trevor: Taller than me.
8. What is her favorite thing to do?
Trevor & Jordan: Make yummy food for us.
9. What does your mom do when you are not around?
Trevor: Do the laundry.
10. If your mom becomes famous, what will it be for?
Trevor: A good cleaner.
11. What is your mom really good at?
Trevor: Reading.
12. What is your mom not so good at?
Jordan: Fishing.
13. What does your mom do for her job?
Trevor: Help us clean the basement. ( Apparently that is all I do:):)
14. What is your mom’s favorite food?
Trevor: Spaghetti cuz you make it lots.
15. What makes you proud of your mom?
Trevor: She makes funny faces so I laugh.
16. If your mom were a cartoon character, who would she be?
Jordan: June from Little Einsteins.
17. What do you and your mom do together?
Jordan: Play I Spy (Jordan's new favorite game)
Trevor: Be friends
18. How are you and your mom the same?
Jordan: We both have shirts on.
19. How are you and your mom different?
Trevor: Because of our hair, mine is all gone. (Shaved)
20. How do you know your mom loves you?
Jordan: Because you say ‘I love you, too’ when I say ‘I love you’

Wednesday, November 19, 2008

I've been tagged!

I liked this tag! It's so simple, all you do is go to your pictures on your computer and find the 4th folder and the 4th picture in that folder and post it and describe what is going on. Fun!

This is my nephew, Parker, when he was a month old. He was soo tiny! (I say that because he is now 22 months old). Aahhh the memories!!

Now I tag: Amy, Chantel, Tanya, and Alice

Saturday, November 15, 2008

A Bad day.....

Josh has had another bad day. He woke up with a rash all over and has been really fussy. Then this afternoon he finally was willing to get down and play... and THIS happens! Sigh.... he was walking and just fell. I am not sure how he hit so hard, but he did. Poor kid.

Thursday, November 13, 2008

Our little Trooper!

I thought I should post an update on Josh. He is still not feeling well, but we haven't had any more of those "seizure" episodes since tuesday night. He has caught a virus of some sort and we are hoping it doesn't last too long. His fever comes and goes, and he has a runny nose now. I have never been one to worry about fevers with the kids... until now! So we just keep him drugged and life will go on. He usually has the biggest blue eyes, and while he has not been feeling well, you can see it in his little face. Poor little guy! He does still have his EEG down at Primary's tomorrow, so we hope that goes well. Thanks for all the prayers and concern!

Tuesday, November 11, 2008

A trip to the ER

Tonight was an eventful night here. Josh woke up from a nap with some weird shaking. He has these episodes every now and then, so I thought it would go away. Then it got worse...and pretty soon he was shaking pretty violently. After a call to the Doctor, I rushed him to the ER. He was taken back as soon as I walked up to the desk. The Dr that saw him said he had a seizure from a high fever that hit in minutes. I did take his temp at home before I left and it was 100.3 but nothing to explain what was going on. He probably had his temp taken less than 15 minutes later and it was 104.7 and his body didn't respond well. His pulse was also too high at 179bpm. So anyway... after a bit of a stay and a couple calls to his Doctors later, he was stablized and we were able to bring him home. I will take him to his Pediatrcian tomorrow morning and then we'll see if there is a virus or infection starting. It's a good thing he has his EEG this friday. That will tell us if this is an isolated thing, or the beginning of something else. He has never had a fever this high before, so the Dr told me he might have this happen again. We need to keep a real close eye on the fever and keep him drugged to help the fever stay down. I will let you know if there is anything else going on. Thanks!!

Saturday, November 8, 2008

Going Private...

OK, so I have decided to make this blog private. I want to keep everyone informed on what is going on in our lives, but want only those of you I know reading it. Too many creepy people out there. LOL! If you want an invite, put your email address in the thoughts and I'll add you. If you know I have your email address, you can just tell me to add you. I will keep it public for a few days to give you some time. Thanks for your help! I want everyone to still keep visiting us!

Wednesday, November 5, 2008

A Funny Story

I am posting Trevor's school pictures, but I have a funny thing to post as well.

First let me explain that Trevor has never been a child to doodle, or write things on paper or anything like that. Jordan is our creative child who makes pictures, notes, cards, ect for everyone. Trevor hasn't been very interested in writing or reading either. The last month or so he has began to sound out all sorts of words he sees and is getting much better. A couple days ago he informed me that he needed to write a note to Jann, the aid on his school bus. I told him he could, and went on with what I was doing. Pretty soon Trevor brought me this paper. I couldn't help but laugh! He didn't understand why it was so funny to me. He has learned what Tattoo's are and loves to put those temporary ones on. He wants everyone to wear them and loves to see how long it will last before coming off. To tell you the truth, he probably doesn't even know that there are permanent ones. So anyway, in his mind this was how you spell Tattoo. Pretty funny, huh!

These are Trevor's school pictures. I am just wanting to know anyone/everyone's opinion on them. Be honest. Scott thinks they could be better and we should retake them. I kinda think they are cute, because they show his personality so well. What do you think?

Scott also doesn't like his shirt he picked out. I had forgotten it was picture day and he was already dressed when he reminded me. Those of you who don't know Trevor well... he DOES NOT CHANGE CLOTHES. Once he is dressed, he is dressed and no matter how much you try to convince him to change, he won't. It's a lovely battle we have on a regular basis.

So what do you think? I look at it from a stand point of how difficult it is to get any professional pictures taken of him and this picture does show his personality and his favorite shirt. Every year he has had his school picture taken with his favorite shirt of the year. This just happened to be this years. Sigh.... please be honest and let me know if you think we should do retakes? Or what would you do?

Tuesday, November 4, 2008

Some help with walking....

Josh got some new clothes!! Just kidding, it is something called a 'weighted vest'. Josh's Occupational Therapist thinks this may help with balance. Alot of kids that have balance problems need some help to know where in space they are. I don't know if that makes sense or not, but he has a low sensory input and his body doesn't always know where he is. He walks too fast or off balance because of it. So you add weight to him and somehow that forces his body to pay more attention. So we got it and we'll give it a whirl!

It has two pockets in front that hold 1lb weights.

This is the back of the vest. It has three pockets. For now we only have weight in his top pocket. He generally falls backwards alot, so we didn't want to put too much weight back there to begin with. We'll see how it goes!

Saturday, November 1, 2008

Halloween Fun!

Here are some pictures from last night. We didn't do anything very extravagant, but had fun with both sides of the family.

This is Josh, Trevor, Aliyah, Jarron and Jordan at Scott's parents house.

This is the grandkids at my mom's house. They weren't too excited about more pictures.

And my dad with the grandkids. It makes me sad we have to do pictures without Kyrie and Ryan. We miss you guys!
The kids at my mom's still with Kendra and Harrison (my cousins).

My mom tried something new this year. you can't tell in the picture but the half egg shells are on fire. The eyes look like they are glowing when the lights are out. It was pretty cool and the kids all loved it.

Wednesday, October 29, 2008

Please read the post under this one labeled "some thoughts" first, so you understand why I posted this poem.

Welcome to Holland
By: Emily Perl Kingsley

I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......
When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.
After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."
"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."
But there's been a change in the flight plan. They've landed in Holland and there you must stay.
The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.
So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.
It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.
But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."
And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.
But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.

Some Thoughts.....

I decided today that even though I told myself I wouldn't use this blog to ramble on about stuff, I needed to vent some frustration.

Yesterday we received a report from Josh's Neurologist in the mail. It was a copy of the report that was sent to Josh's Pediatrician. It didn't have any lab results, just a history, diagnosis and recommendations about Josh. It was basically what was said at his appt a couple weeks ago, but with more medical jargon. Although after reading it (and having help translating it LOL, thanks Mom and Luke!) it had a slightly different tone than we got from the appt. Josh was diagnosed with global developmental delays, which means full body... like every area. He was noted to have a 'unsteady, immature gait for age. He was noted to have delays in speech, language and mild motor impairments, particularly with respect to an immature gait and slightly immature fine motor and gross motor skills.' So that is pretty much what we know and not anything surprising.

The next part of the report is what I am struggling with. He was diagnosed with Microcephaly, which is a small head size basically. But what we didn't know was what that truly means. I think the Neurologist didn't come right out and tell us the nitty gritty because it's not good news. Microcephaly means abnormal smallness of the head in relation to the size of the rest of the body: a congenital condition in which the brain is not fully developed. A congenital condition is something that a person is born with and could be genetic, or could have been caused by some other environmental factor. Which is why he needs to see a genetisist. He also was diagnosed with Brachycephaly which means a short head from front to back. So it's kinda like a double edged sword. The one thing the Neurologist did say was that he will have problems with development. It's not a matter of if, but when. He may not progress in some of his cognitive areas, or he may begin to and then stop at a later time. So we are in the unknown here.

I look at how sweet Josh is and it makes me so sad to think he may not be like this in the future. We will do everything we can to help him, but there is only so much modern medicine can do. I don't know why Scott and I were chosen to have two special needs children, but we were and we will make the best of it. I am going to post a poem that my friend Marian sent me, but was also read at Trevor's graduation from the Northern Utah Autism Program. It pretty much sums up how I feel and hit it right on the nose.

Friday, October 24, 2008

Just playin' around!

Today was a fun day at our house. I babysat my neice and nephew all day so my sister-in-law, Raeanne, could take a class at the hospital where she works. It was a nice end to the week with having the kids come and play. Jarron and Jordan had so much fun in the basement playing Star Wars. I was surprised how long they played down there.

Of course I had to take some pictures to document our fun day.

I told Jordan and Jarron to smile, and they decided to put their arms around each other. CUTE!

Josh used to be so much bigger than Aliyah, but she is catching up to him now. He is a little taller, but they are alot closer in size now than they have ever been.

Isn't she a doll? I love having some girl time! She is so happy all the time!