Thursday, May 29, 2008

Early Intervention...(Finally).

I have been in contact with EI since MARCH, they are just now starting to give is services. It has been one problem after another, but finally we will be starting as of June. I understand that these case workers are over worked but this is my baby and she needs this therapy, do me a favor and call me back! Honestly, I called my service coordinator 2 times yesterday and 4 times today, leaving messages every time, she happened to answer on the fourth time. I basically told her that my insurance is running (if not out), and that I would not be able to afford to pay out of pocket for the therapy ($200 a session, twice a week...EEK) and I told her that she needed to hurry up, put the paperwork through and start it as of June. So, she did and now I have a huge weight lifted!!

Nothing new with Leah, she didn't have a good therapy session again today--bad timing, again. She lasted about a half hour and then was crabby. Lisa said she would like to see Leah grabbing more with lefty--she never does. We have to put everything in her hand for her. I asked if she thought that at some point Leah would be able to do it on her own and she said she thinks she will. Well, it's ok that our session ended early because I got to talk to Lisa about a bunch of different things. We had recently been talking about Leah starting some water therapy, which I'm all for! So, I was questioning doing water therapy and not doing regular PT; basically I wanted to know which one would be more beneficial for Leah. Water therapy sounds like fun--but is it what's best? At this point Leah hasn't seen the PT for awhile, so I guess we will have to wait and see what she says. We are going to make an appointment to see her next week. I'm thinking that since now that Leah is more mobile we should probably start some PT. Anyway, Lisa ended up suggesting that we do both PT and Water therapy. It kind of freaked me out at first---thinking that would mean 4 days of therapy, but after I realized this is the best time to do it. For one, Leah is so young and so mold able she should get all the therapy possible now, two--I'm not working right now, so I have the time and three--my husband and I would like to have more kids in the future, right now it's all Leah, all the time! So, after thinking about it--I love the idea of 4 days of therapy! Of course, water therapy does not take EI kids, so we would have to pay out of pocket, but it's not too expensive.

I was also concerned about Leah's eating. We started baby food at 6 months, she does OK with it. She doesn't eat much--but still nurses often and is gaining weight. The doctor said at 8 months to start finger foods, so I did. Leah just turned 8 months on Sunday, but I had been trying finger foods for a few weeks prior. Anyway, she does ok with the Gerber Puffs but flips out when I give her something with texture. For example, I gave her some cottage cheese and she was literally convulsing because it had chunks. So, of course I freaked out and immediately was thinking that there had to be more to that--like maybe she had some food sensory issues. Lisa (of course) calmed my fears again and said that there would be no correlation between hemiparesis and food sensory issues--that's not to say that some hemi kids don't have food issues. Anyway, she told me not to worry about it yet, since Leah JUST turned 8 months. She said that as far as cottage cheese, that it was too far of a jump from the smooth baby food. She suggested mashing it up a little more before giving it to her and she also said to try to give her Cheerios but to break them into fourths and start slow. I'm going to try it and see what happens. For the record, Lisa also runs a group with children who have food sensory issues. It's amazing how much a trust this women and I have only known her for a short period of time. I'm very thankful that Leah and I were blessed with such a wonderful therapist.

On a different note, I need some blog help--can anyone tell me how to space out my posts? Meaning after I post there is the comments area, but it's right on top of the previous post. How do I create a space? Thanks!!

Tuesday, May 27, 2008

Busy Day!

Busy Day! Tuesdays are always are busiest day! We go to Gymboree Music in the morning and then therapy in the afternoon, by the time we get back to the house we are both exhausted! Leah loves Gymboree Music--she's so funny, she dances the whole time! Therapy today, went ehhh ok. I keep telling Lisa (OT) that we really need to find a different time for Leah's therapy. It's at 3:00 now and she usually naps around 2/2:30, so I am always waking her for the session. She never gets a good enough nap and therefore half way through therapy she is not happy! So, today we had to end our session almost a half hour early! :( I'm hoping we can switch the times--I would hate for Leah not to be getting 100% out of therapy every time. Other then the, middle-of-the-session melt down, therapy went well. They are very impressed with her ability to get up on all fours and rock! They think in no time she will be crawling! YAY!

On another note, I have been really struggling with something. I'm struggling with what and when and how to tell people about Leah. See, we recently moved to this community and we have started to make really great friends--all with little kids. At this point, none of them are able to tell that there is something "different" with Leah. But, lately they have been asking me what I do during the week and therapy twice a week really takes up a lot of my time. Up in till now, very few people know what it going on with Leah, we felt as Leah's parents we needed to accept and be ok with it, before letting everyone else in on it. So, this weekend I told one of my friends that I take Leah to therapy twice a week and her response was, why? I then kind of freaked out and didn't know what to tell her, my mind was racing a mile a minute--do I take the easy way out and tell her that Leah has weak muscles on one side or do I go into detail and tell her Leah had a stroke in utero and she has hemiparesis. Well, I took the easy way out and now I'm kicking myself for it. I'm not ashamed my daughter has this--so, why do I feel the need to hide it? I should have told her. Maybe, it will make people more aware--strokes do happen to little ones. I think another part of me, is that I don't want people to look at Leah differently. She's no different then any other child--she just needs a little extra help. At this point--she isn't even that far behind (if at all). But, my fear is that once I say there is a cause and a diagnosis that they will think something is "wrong" with her. I am going to keep on pondering over this. My head says tell the whole truth, but my heart says to keep it in a little longer.

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Sunday, May 25, 2008

Rocking!!

Just a quick post...
I posted recently about Leah getting up on all fours, well yesterday she started rocking!! I love knowing that it is building strength in "lefty" and I know it's only a matter of time before she takes off! I REALLY need to baby-proof now! :) It's amazing when she is up there rocking, I can almost see her thoughts, I can tell she is trying to decide what to do next--she just hasn't figured it out yet!

Friday, May 23, 2008

"Thank You for being a Friend"

I just wanted to take the time out to thank someone who has really helped me in the past few months. This person was one of the first people to tell me that "it's gonna be ok." Her daughter also has Hemiparesis/plegia. She is a wonderful friend and a wonderful mother.
So, KARA--Thank you! I appreciate your daily emails and I look forward to them everyday. Thanks for always being there when I need a pick me up. You are a great friend.

Thursday, May 22, 2008

Neurologist Appointment

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Well, today Leah had her follow up appointment at the Neurologist. This was just to see how Leah has progressed and to make sure there was nothing new. Good news is, the Doctor said that Leah looks great! She once again confirmed that Leah's arm is tighter and more affected then her leg, but other then that she said there was nothing to worry about. She was quite impressed with Leah's clapping!! The video I posted is from a few weeks ago--now she claps at everything!! It amazes me everytime! Anyway, the Neurologist said she wants to see Leah again at a year and probably again at a year and a half, after that she said she most likely won't need to see her again. She did give me a recommendation to go see a rehab therapist. She basically said this would be another set of eyes. I think I am going to run it by Lisa (OT), I don't want to go against her, because I trust Lisa completly, so I will see what she says to do. On one hand it may be great to have another set of eyes to possibly catch something we have not, on the other hand it scares the daylights out of me. The thought that there could be "something else" is scary!! While at the Doctor today, we asked if she thought there was anything that Leah was really 'behind' on, she said maybe her speech. I have been worrying about this for a few weeks now, because Leah really isn't babbling as much as I think she should be. She definitly knows she has a voice and uses it, she also recently started using her hard "G" sound (gee, gaa, goo) but she it definitly no, mama, dada or baba sounds. I asked Lisa to ask a speech therapist and the ST said not to really worry until 10 months or so. The Neurologist wasn't worried at all and didn't really think she was "behind", but rather that there is such a big window of when babies should do certain things and Leah might just be in the later part of the window. All in all, I feel good about the visit today.

Tuesday, May 20, 2008

Doctors visit, Yogurt and Therapy --All in a days work!

Yesterday, I called the doctors office because over the weekend I notice that Leah has a rash on the back of her head. Leah has very sensitive skin and normally I wouldn't worry too much about a rash but this rash was on top of a pretty big bump! So, it made me nervous. Anyway, I called the doctor and he wanted me to come in today. We went in and he said it's a bit of excema and to just put some hydrocortisone on it, but if it gets worse to call. Easy enough, I am just glad it was nothing more. I don't want to take any chances anymore. While we were at the doctors, I asked about giving Leah yogurt. He said since she is almost 8 months old that it's not a problem, he also said I can try cottage cheese. Well, I went and bought the YoBaby yogurt. I got the pear/peach variety. I gave Leah a pear one for lunch and she LOVED it! She couldn't get enough. I'm thrilled to give her something else that she likes--since she is pretty picky when it comes to her food!

After her yummy lunch, we went to therapy. Leah really enjoys going to therapy, but boy do they work her hard! She always takes the best nap afterwards. I really think she enjoys going the most because she loves the waiting room. I seriously think she could sit there for hours watching all the children that come in and out of that place. When Lisa or Katie (OTs) come out to get us, Leah gets all concerned...she doesn't want to leave the waiting room! Once she gets in and gets undressed she loves playing with all of the toys. She did great and showed them how she can get on all fours. We really need to work on transitioning from sitting to lying and visa versa. Her therapists don't seem to concerned at this point, but honestly...I AM! Not because I think she won't do it, I know she will, but because when she wants to get out of the sitting position she falls and always hits her head. I can't be there to catch her everytime and often sitting results in crying! I'm trying hard to work on this with her, but really Lisa (main OT) wants her to get the hang of sitting up from lying first. She's very close to getting up with righty, she needs only a tiny bit of support at her hips. Lefty, doesn't have the strengh yet to push up...but hopefully soon!

Monday, May 19, 2008

All Fours!!

Leah has been army crawling for about three weeks now. She is doing wonderfully with it, she knows what she wants and she goes and gets it. Of course, it's usually something she can't have--a piece of paper, the telephone, the remote control and her new favorite my feet! Her therapist is very impressed with Leah's use of "lefty" while she crawls. She is still having problems shifting her weight onto her left side, but manages to get her arm out 75% of the time. Weight shifting has always been Leah's biggest problem. She will try to shift onto her left side and over compensate by rolling over. Anyway, we have been working in therapy on getting her onto all fours. We grab her legs and she pushes up nicely on her arms--she just doesn't know where to go from there. She had yet to get up by herself, until today!! I was lying on the floor playing with her, she was on her tummy, and I looked over and there she was on all fours! Of course, I started jumping and cheering for her--which in turn scared the daylights out of her. None-the-less, she did it again a few minutes later! I always think when these things happen it's a fluke the first time, but a second time--she knows what she is doing! She still doesn't move, but it's a step! I can't wait to share with her OT!! I love bringing in good news!!!

Leah's Story


I had a completly normal pregnancy. No complications, no problems--other then nausea! My delivery was fairly uncomplicated. Leah came 10 days late after an induced labor and 18 hours! During delivery her heart rate kept dropping during every contraction, but it never got to the point where the doctor was concerned. My beautiful baby girl was born healthy at 6lbs 2 oz. Leah went through her first 3 months of life completly healthy, she slept great and she ate great. Around 3.5 months I noticed that she was grabbing and reaching for things with her right hand but not her left. I didn't think too much of it, I thought she was going to be right-handed. At her 4 month check up I decided to ask the pedi about it. He said he saw that she definitly prefers the right hand, but that he didn't think anything of it. None the less, he said we should go have her evaluated by an OT and a PT. We went the next week, where they didn't tell me much, but basically told me something was up. I then read and read and read everything I could on the internet--I basically scared myself out of my mind. I thought the worst. I would read something and think oh my gosh, this explains Leah completely. It was WAY off base. I did stumble upon Hemiparesis and thought it sounded like what she had. After the OT and PT eval they suggested we go see a Neurologist. The Neurologist confirmed my thought of Hemiparesis and referred us for a CT scan. After the CT scan, we found that Leah had a stroke sometime during the third trimester. Leah had tons of blood work done and some of it came back abnormal. We then were refered to a pedatric hematologist, where we went recently. The hematolgist basically said that Leah's chance of having another stroke is between 2% and 3%, he also said that there is nothing to do about the abnormal blood tests. There may be something later on in life, but for now it is no harm. We are very fortunate that Leah's case is very mild. She has hit all of her milestones thus far. She is 7.5 months now and crawling all over the place. I know that as she gets older things may be harder for her, but she improves so much everyday. She goes to OT twice a week, PT eval once a month (her leg is MUCH less effected). I'm so proud of Leah, she one determined little girl and she is just the sweetest!
This is a picture of Leah...brand new! She was about 10 minutes old here.

Sunday, May 18, 2008

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New Blog!

Ok, so as you can probably tell I am not experienced in this blogging business! I would love it if someone can give me some tips on how to customize this place! I tried, but obviously it didn't work.


Anyway, I started this blog to track Leah's progress through out the months.


Where we stand right now:

Leah is 71/2 months old. She was diagnosed with Left Hemiparesis at 4 months old. She has been in Occupational Therapy ever since. She was originally going only once a week and recently moved up to twice a week. I often struggle with Leah's diagnosis and need a place to vent about it. I also plan to use this to announce the wonderful work that Leah is doing! I will post Leah's story shortly!


-Amanda


Here's the love of my life...