June 30, 2011 - Momentous Occasion!!

Conner pooped on the potty tonight...on purpose! And he has been dry for 3 days straight. Next step is him telling us he has to go. We are so proud of him. Tomorrow marks 1 week in underwear during the day. Not sure how/when we will tackle night time, but I am just so happy we have made it this far. Potty training any child is not easy but potty training a child with special needs is so much harder than I ever thought it could be. This week has been exhausting.

This is Conner in his underpants (he is enjoying sitting around without pants on these days, much easier to go that way!)...checking out his sister's play gym. It has a rocket ship on it which happens to be an obsession of his..so it's right up his alley! Too bad, it's a little small for him!

June 27, 2011 -Summer

Well here we are at the end of June already. Today was Conner's first day of camp. He is going to a new place and it is bittersweet for us. I am very happy with the camp (nervous, but happy). They have a great preschool camp and on top of it just being a great place, Conner is a lucky participant in an inclusion program. He is in a regular "bunk" of kids, but he has a special counselor looking out for him. She will help him with the pool, the potty (yes, I said potty...more on that in a minute) and anything else he might need help with. We have met his counselor a few times already, and although she seemed a bit nervous at first, I think she will be great. Conner knows that "Michelle" is his "own counselor" and that Miss Shellie is his other counselor (the main teacher). We have been talking about camp for a while so he has been excited about it. The hard part is that he is with all new kids. He doesn't know any of them. Conner is pretty easy going and he likes most kids, but it is hard for other kids to understand him sometimes. I just hope that kids are nice and play with him and that he has fun. He is going there 3 days a week and then the other two days are spent at speech preschool and private therapy. Conner is a busy boy (which means Brennan is a busy girl!!).

Anyway, the big news is that we are really working hard on potty training. Yes, I know that Conner is almost 4, but he is developmentally delayed, has a speech disorder and has low tone. This is not a great combination for potty training. I feel like we have been introducing the idea to Conner for almost 2 years. This past week/weekend, we had a few days with not much going on so we really just got in to it and this time, we are not looking back. Conner has been in underpants since Friday (still a diaper at night). He has been doing great and having very few accidents if we take him to the bathroom on a regular schedule. He is not yet asking to go or telling us when he has to go, but we are hoping he will catch on and will start "getting it" very soon. In the meantime, we are sending him to camp with several changes of clothes and hoping they continue to work with him. This has been a HUGE step forward for all of us and we are SO proud of Conner and how hard he is trying. This is not an easy thing for him at all but he is trying.

He has had a rough month health-wise and just when he finally seems to be on the mend, he starts coughing again. This last month I have worried about Conner's lungs more than I have since he was an infant. We have used the pulse ox more in the last few weeks than in the last 2 years combined. Conner ended up on steroids after a few worrisome days and ended up at the ER (he was fine) once for low oxygen saturation.

We saw the physiatrist... basically, the doctor that finds something wrong EVERY time we go there. Last time, he wanted Conner to have spine and hip x-rays and see an orthopedic doctor. This time, (we go every 6 months), he wants us to see a pediatric plastic surgeon to look at the big scar on Conner's calf to make sure it isn't causing any trouble for him as he grows. It's always something. I think it's part of him, has been since he was a day old, so we are used to it, but the doctor just wants it checked out.

Otherwise, Conner has been doing fantastic. He absolutely LOVES being a big brother and has been talking to his sister all the time. He tells her "Brennan, you're my best friend", "I love my sister", etc. etc. It is so cute, it could melt my heart. I'm so relieved at how he has transitioned to being a big brother. I can't wait to see them play together as Brennan gets older. I'm hoping he'll continue to love her as much as he does now (and share his toys!). His speech has come even farther and he is talking up a storm. He is so creative and imaginative that sometimes I have no idea what he is talking about. He has such a long way to go in some areas, but in other areas he is doing so great.

Brennan is doing great too. She had her 4 month check up today (she's not 4 months for another week though). She had 2 shots and is a little cranky since then (I would be too!). She is getting HUGE...75%ile for weight and height and 50th% for head circumference. The doctor said we could start trying solids anytime we think she is ready. We will probably wait until at least 4 months. She said all the guidelines for feeding solids have changed so it's totally different than when we were feeding Conner solids. She doesn't even want us to start with rice (we didn't ever give Conner rice either because of constipation) because it is high in carbs and oatmeal has more fiber and is better. She said that the new studies are showing that American kids are more obese and have more allergies so they are trying to change how babies are fed to try to address that. Thankfully Conner is a great eater so I can only hope Brennan likes fruits and vegetables as much as he does! Of course, I am worried about a thousand things, but she assured me that Brennan looks great. I was worried about torticollis but she said everything looks symmetrical and she has good range of motion in her neck. She gave me some pointers to help keep her looking to both sides, most of which I try to do anyway and remember doing with Conner but it's good to get a reminder.

Brennan isn't on a good schedule yet. It's hard because she is with me all the time but we hope as Conner gets in to camp, we get some appointments out of the way, that we can be home more and get on a better schedule. She definitely eats on a schedule, but doesn't sleep great during the day. She is sleeping really well most nights so we are doing good.

We had our first road trip as a family of four. We went to Cleveland to visit the Stein's. Conner had a blast with Lindsay and Zachary and is still talking about them. He didn't sleep well at all though so I'm a little nervous about the few other trips we have planned in the next few months.

I had a bunch of photos uploaded but can't find them at the moment..so maybe in the next day or two they''ll be posted.

Summer Infant Seat Giveaway

#Win a SuperSeat from @summerinfant  & @_themaven ends 6/20 http://ow.ly/5bDqq

June 2, 2011 - A New Bike, A Cage and more

Had to quickly post about today before I hit the hay. Conner's schedule is quite busy these days, but he does well with a structured busy day. It seems to work for him. Today started at 9. He did a make up day at speech preschool (he will start going every T/Th in a few weeks). David took him while I took B to a doctor appointment (more on that in a minute). Anyway, Conner went to preschool and as always, had a great day. The teacher told David (and told me the same on Tuesday) that Conner is a pleasure to have in class and she loves having him. Always makes parents feel good to hear stuff like that. Oh and on Tuesday, the little girl in the class told her mom that she wanted Conner over for a playdate.

So David drove Conner from there to OT and Speech at another place. I met them there with the baby so David could go back to work. Anyway, Conner had a great day there...that was from 1-2:30. Then we got back in the car and drove to PT at yet another place. I haven't gone back to watch his session in a while because it has become very distracting for Conner. Today, Conner kept saying he was hungry so I ran to the little cafe thing and bought him some Bugles (nutritious, I know!) and walked back to give them to him.  I saw a boy (who was Conner...but I was so shocked!) riding his bike with training wheels down the hall. I couldn't believe it. David had brought the bike up there because we wanted to work on riding it...Conner was getting way too big for the tricycle so we bought him a Cars bike. Anyway, he did a great job riding his new bike. It still has special pedals on it that basically velcro C's feet to the pedals, but maybe in a few weeks, we will try to take them off and see what Conner does.

After that, Conner's PT tried him out in their new "cage". It has a fancier name...something like Universal something or other, but it looks like a cage. Conner called it a locker. Anyway, she got him all hooked up and once he got comfortable, he was jumping all over the place. I don't know much about it, but it was cool, and I was so proud of him. He is getting better every day with his jumping and I think this new activity is going to be fun for him. He was whipped by the end of the session.

So Conner had a great day as far as I'm concerned. He continues to make progress in every area and we are so happy with how well he is doing.

Brennan had to go to the dermatologist today. She has a Nevis Simplex (stork bite) on her nose/forehead. It is so faint that we don't even really notice it, but the pediatrician wanted us to go have it checked just because of its location. She also has a hemangioma on her shoulder. We weren't concerned about either of them, but the dermatologist wanted to try to reduce the one on the shoulder (he said the one on her face should fade and disappear). He gave me three options, but seemed to lean toward one...so we went ahead and started to freeze the hemangioma. It only took about 15 seconds total...it measured 16 cm by 11 cm, so hopefully when we go back in 4 weeks, it won't have grown as much. I was really hesitant to do it at all because I didn't want her to have any unnecessary pain but the doctor really wanted us to try it now instead of waiting. The other option was trying a topical drug but when I asked about safety, he couldn't really reassure me enough. Hopefully after this is done with, we won't have to go back (although he was a nice doctor and I will consider taking Conner next time we need a dermo for him).

Other than this, Brennan is doing really well. She is cute as a button and very well dressed! I have tons of cute hair clips for her already! She doesn't really love tummy time but the last few days she has had much less spit up so maybe tummy time will get better. She has rolled a few times from her stomach to back, but I don't think it was very purposeful yet. She still loves sitting and standing and whenever we lay her on her back, she tries to lift her head.

Nothing much else going on...this weekend, more hippotherapy fun!

May 20, 2011 - Time flies

I can't believe it's already been almost a month since my last post. Time is flying by. Brennan is already 10 weeks old and she is getting huge. It's crazy! Well, I only have a few minutes to write before Conner is done with school but thought I would write a quick update.

Conner is doing great. We had his 3 year evaluation at school (not because he is 3 years old, but because every 3 years, they have to re-qualify for the program at the public school). So we did that last week and then this week we got the results and did Conner's (preliminary) IEP. We haven't signed anything yet because we are still in the decision making process, but things are looking pretty good. So first of all, the people doing the testing are his school speech pathologist who knows him pretty well from this school year, an OT, PT, case manager, and a school psychologist. They test his speech/language skills, fine and gross motor skills, ability to perform activities of daily living, socialization. The speech stuff was done over a 2 week period and Conner did great. He tests just at the low-average range for his age, which, considering how far behind he was at the beginning of the year is pretty incredible. We are very pleased with this. His gross motor skills test at just slightly below his age range, mostly because of jumping and balance, two things that may be challenging for a long time, possibly forever because of Conner's low tone. But, the PT is very happy with how far he has come (she evaluated him at 6 months old!). Fine motor skills are currently Conner's biggest and most difficult challenge. As I have probably said before, his hands just don't work how he wants them too. He works very hard to compensate and hopefully we can come up with some adaptive stuff to help. His private OT has started a few things that seem to be really helping. We need to work on being able to dress himself and potty training. Socially, Conner is right up there with his peers.

So we were very happy with how the evaluation went. They really seem to "get" Conner and see him for how far he can go and not his limitations. He was originally in the program under the category "Otherwise Health Impaired" or OHI. He has a medical diagnosis, but because he does not have any major physical limitations based on his CP diagnosis, they had to find a new category for him. So now he is categorized as Speech and Language Delayed. It really doesn't matter what category he is in, he will still receive the same services.

This week, we had the IEP where they tell us their recommendations. As expected, they recommend their special ed preschool program that meets 5 days a week. This is the same recommendation they made last year and we weren't that happy about it. But this year, they acknowledge that unfortunately, that is really all that our district has for kids like Conner. They don't seem to think it is an ideal situation, so they are working with us on a combined day. We are going to try to send Conner to the public general education preschool program in the morning and for lunch and then he will go to the PAL (special ed) class in the afternoon. It's all in the same building. If they find after a while that this is not a good/proper placement for him, then they will allow him to be in the gen ed class but with some extra help. This is a new option that they have had for the past year. Because Conner needs help in 2 areas primarily (OT and Speech), they want us to do the special ed class. I went to visit the preschool this morning and have been asking a lot of other mom's about their experiences and everyone has only positive things to say about it. It will be a change because Conner will lose the Jewish content and Shabbat which he absolutely loves, but it is a sacrifice we are going to make right now. We are going to have to just try to make up for it at home and teach him this stuff ourselves. He will also be leaving his little friends and we will also be leaving our comfort zone, but that was going to happen eventually anyway. The class we are trying to get Conner in will most likely be something he does for 2 years, so maybe next year, he can stay in the gen ed room all day. That is our goal. I left a deposit this morning but the details still have to work out. SO I'm really hoping that it works out and feel pretty good about it, the best I've felt about it in a long time. I hope Conner adjusts well to a new camp and then a new school. It's a lot for my little boy all at once.

Quickly, about Brennan...when she was 8 weeks old, David took her for a shot and she was up to 11 pounds. She's even more already. She seems huge. She is cute as a button and we are loving her to pieces. Conner absolutely LOVES her and I hope they will be the best of friends. Brennan moved to her crib on May 5 and adjusted great. She sleeps just as good in her crib as in the bassinet and has more room to move. She discovered her hands this week and has been sucking on them when she can't find her pacifier. She is doing okay with the swing and bouncy seat, but they aren't her favorite. So far, what she really loves is the playmat that I bought her. She loves it. And she also really likes when we sit her up or stand her up. She is going to LOVE a Bumbo and a jumper/exersaucer when she is a little bigger. She is very happy baby except at about 6-8 at night...that is her unhappy time for sure...but nothing too bad. I'll write more about her soon but have to run!

April 27, 2011 - Therapy (More about Conner!)

Therapy has been going awesome for Conner. He took pretty much the whole month of March off of everything because we just couldn't do it all with me having a c-section, having a new baby in the house, visitors all the time and then me getting sick. It was just too much. But Conner is a great patient (in my opinion) and has been making great strides in therapy.

His speech has taken off. When he turned three, he only had single words, and not very many of them. Now, he is having complete conversations and his language has caught up to typical kids of the same age. It is incredible how far he has come. Now we are working on intelligibility (ability for others to understand him) and some concepts. We are thrilled with how far he has come. I never thought it would happen because it was such slow progress. I love having conversations with Conner and he says the best things. He cracks us up. He is so creative and imaginative. He turns everything in to a rocket ship and makes it blast off. He is still very social and loves playing with his friends from school and regularly requests a trip to their houses. He is still going to Children's for speech therapy twice a week and to the public school once a week for speech. A few weeks ago, Conner started Beaumont's speech preschool. He is going there one morning a week and over the summer, we are going to send him two mornings a week. There are only 5 kids in his class, a teacher and a speech therapist. We have been very happy with it so far. They work on kindergarten readiness (the kids are 3-5 years) so he is working on lots of useful stuff. They do a little fine motor and gross motor work too, so overall it is a great program for him. In just 3 weeks, they said Conner has gone from pretty much silent to being a chatterbox. Conner talks much more when he is comfortable with the environment (like at home, he talks non-stop!).

Conner's fine motor skills still have a long way to go. He has a very hard time with simple fine motor tasks. Yesterday, his therapist taped up three of his fingers so he could only use his thumb and forefinger. She did it at 1 p.m. and he made me leave it on the rest of the day (I had to rip it off at 6 and he cried). I think the bandage made it easier for him to isolate the fingers he wanted to use. I wish we had tried this sooner. Hopefully this will help and we can come up with different exercises to do with different fingers. Conner has the most difficulty with weight bearing on his arms (push up style activities). He doesn't mind the activities where he is pulling or pushing with his arms, but when he has to hold his weight on his arms, he resists. His arms/shoulders/hands are very weak and it seems that no matter how hard he works, they are not getting stronger. This affects his fine motor control greatly. If he can't get better control of his hands naturally, I'm hoping we can find some adaptive stuff to use for school. Overall though, he is doing excellent in OT too. He is seriously an awesome kid!

PT is going well too. Conner is still working on jumping...it's a work in progress and has been for a while. He wants to do it so bad but just can't get any air. Once he masters jumping, then next is hopping! I don't go back with him any more, so I don't get to see what they are doing but I know he's doing a great job!

Conner started hippotherapy again 2 weeks ago as well. He is loving it even more than before. He gets to help shovel poop, put it in the wheelbarrow and put it in the "poop machine". He has also had the chance to feed the horses too and help take them out to the pasture. He loves going to the farm and I'm pretty sure that he wants his next birthday party at the same place as last year. We have given him several options, but all he wants is the farm! I'm so glad that he loves horses and he is getting therapy and having so much fun at the same time. He doesn't even need us when he's there. He doesn't look for help any more, doesn't want to even get off at the end. It's such a great experience for him and we are lucky we found such an awesome therapist.

So overall, we are very happy with how Conner is doing in therapy. He has a very busy schedule on Tuesdays and Thursdays but he does great with it. I think he is just so used to it. I don't know if we will ever get to a time when he doesn't need it, but if we do, I don't know what we will do with all the free time!

Next post...school...then maybe a fun post (we do have a little fun too!), i have a ton of catching up to do!

April 27, 2011 - All About Conner - Medical stuff

I haven't done a post all about Conner in so long. So many things have been going on with him and he has changed so much over the past few months. He has handled all the changes in our house so much better than we ever expected possible. He is such an easy going boy and although he does have some pretty impressive tantrums, he is in a good mood most of the time!

Medically, Conner has been doing okay. He was sick for almost 5 weeks straight, starting with a runny nose, then a fever, strep throat, fever again, runny nose the whole time, then ended up with sinus infection that ended up in his eye, so he finally got an antibiotic which seemed to help finally clear everything up (plus they finally had spring break so it gave him some time to heal!). He had to miss a few days of school and felt miserable for a few days, but he seems to be getting back to himself finally. We visited the pediatrician several time during those 5 weeks. Last week, we had a check up with Conner's pulmonologist (who we LOVE!). He is hoping that once his current cough goes away and the weather gets a bit better, we can try to get him off all of his asthma/lung medications for the summer months. That would be great! He added an allergy medicine too because Conner has had some serious circles around his eyes and they have mentioned that at school several times. The side effect of the medicine is sleep so we are hoping that it will also help Conner with his sleep trouble which has continued for months.

We have also been working on trying to get Conner off Prevacid. He went through months of spitting up around the end of last year and beginning of this year, but that seems to have tapered off. We are hoping that Conner will finally outgrow this reflux. We have been weaning him for the past few weeks and he has seemed okay, but now that he is just about off all of it, he has started having some bad "urps" that make him cough and gag, give him a bad taste in his mouth, etc...so we will see. We would LOVE to get him medicine free for at least a while, but we will have to just take it one day at a time. The GI doctor was very happy with Conners' weight the last time we went and he said he wouldn't bother me about it again. Conners' weight is fluctuating around 30-31 pounds and he has gotten taller so we are very happy with how that is going. He looks huge to us now and is outgrowing everything. We used to be able to use his clothes for over a year, but now it looks like he's not going to be able to wear last summer's clothes this year. I'm not complaining!

Conner still sees a Rehab doctor. He sent us to get some x-rays done of Conner's spine and hips. Because of his prematurity and low tone, Conner is at risk for hip dislocation and scoliosis. So they wanted to get a baseline picture. So his hips looked fine, but the spine showed a large degree of a curve. The pediatrician said if the degree is greater than 10, she will send a child to an orthopedic doctor, especially a patient as young as Conner. His x-rays showed a 22 degree curve...but after waiting months to get in to the orthopedic surgeon, the doctor is pretty sure that Conner was bending in the picture and his spine looks mostly straight. He, of course, wants him followed every 6 months just to make sure nothing drastically changes, but for now everything looks good. The frustrating thing is that the rehab doctor is always looking for things that are wrong and very rarely focuses on the positive changes in Conner. We would love to quit seeing him...but our pediatrician would like us to continue with him for now...so we will...for now.

Conner's eyes have been a bit of an issue lately. Actually, I'm not sure if they are an issue because he can't really communicate what he sees, how he sees, etc. But in the last few months, we have noticed a lot of squinting, rubbing, difficulty distinguishing objects, etc. We have been going to the eye doctor regularly since Conner was a baby, but the last few times have been VERY difficult because Conner doesn't like the guy. So we are switching to another doctor in the same practice who was highly recommended by Conner's pulmonologist and pediatrician (we trust both of them!). We are going next week, so we will hopefully start to figure out what is going on. Conner is at risk for eye problems because of the retinopathy he had as a baby and because he had laser surgery which decreases peripheral vision. Maybe it's just allergies or something minor...that is the hope.

Well I think that's all the medical stuff...I'll save the rest for another post.