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!
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!
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!
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!!!
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.
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!
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!
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!
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!!
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!
Welcome to our blog. This blog started out as a family blog to share pictures of fun events. As life has gone on we have found our family going in a new direction, one we never thought or imagined. This is our life and how we survive raising two boys with special needs, and one sweet baby girl with challenges of her own. We love our life and wouldn't change it for anything. Thanks for visiting!
I am a full time wife and mommy and I keep very busy! I married my wonderful husband, Scott, on March 10, 2001. We have three wonderful boys, two of them have special needs and one Sweet new baby girl with her own challenges. You can usually find me helping with homework, running to and from school, keeping up with therapy for our little ones, cleaning the house.. the list will always go on! We take life here one day at a time and enjoy every moment we get.