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Saturday, December 17, 2011

Only the best!

So this past week was a busy one yet again!

The other night, Josh and I were in the living room and Brielle was in the family room with the dogs and the tree. She had her walker and was playing with the dogs. The dogs dropped their ball so Brielle went down to get it. She was in a crawling position and stood up all by herself with NOTHING to hold onto!!! Now, I dont think I can express in writing how HUGE this is!! We have been working on this for 2 months!!!! After Ms. Lisa has showed her over and over, she FINALLY DID IT!!! I of course, had to text Ms. Lisa right away!! She was soooooo proud!!! Ms. Lisa also has us standing her on a wall or the couch to let her get the feeling of getting her balance herself and then starting to walk when she feels ready! She is doing sooooo well!! She can take up to 5 steps! I think we get sooo excited, we make her soooo excited so she trys to run to us and then looses her balance. If she slows down she does better. But shes doing AMAZING!! Orthodics come Tuesday!

Monday we had Speech therapy. That was a good appointment. Over the past few weeks we have been working on getting Brielles Diaphram and rib cage to lower/stretch out. So to achieve this we take our thumbs and apply light pressure on her back. Our other 4 fingers go around her front and on her ribcage. You apply the light pressure on your thumbs and then the 4 fingers pull back towards your thumb. While doing that, you put her on your legs and bounce her. You can tell how she opens up because she starts "singing." Ms Lisa could definately tell she was opening up more and she said she sounded louder!! Thats one thing almost everyone tells me is that Brielle is soooo quiet. Hmmmm Must just be me that thinks otherwise :)

Tuesday we had physical therapy. She said Brielle is tighter than 2 weeks ago! Her hamstrings are tight and her lower back is now tight. So to stretch that we just put her on her back with her feet on the floor, knees bent and have her lift her pelvis to create a "bridge" NOT a big fan of Brielles! Her hammys are tighter due to her wanting to walk more and more! So just keep stretching as much as we can.

Occupational came Tuesday as well. We have been working more and more on Brielles Sensory Integration disorder (SID). She brought a bunch of toys. Im not sure the "correct" term what have you for them, but they are the slimy, stretchy etc. Brielle was not exactly into them but could not put them down. Her face was "YUCK, ICK, UH!" But she couldnt stop grabbing for them. Ms Terri gave us a "corn brush" to desensitize her. We have to rub each arm from pit to wrist, leg from hip to ankle, Back from Diaper to neck line, Hands, and feet Every 2 hours! We dont do her face or her head. This should help with the SID. "Red Flags" Of SID that we have noticed in Brielle are Sensitivity to loud sounds (ex. at the parade, she did not like the horns, loud music etc.), movements (If you scare her she really freaks out! Ask Papa Brad!!!!!) Those are increased sensitivity. She has Decreases Sensitivity to foods. She prefers spices and the more flavorful foods. As we are finding out with her refusing to eat, anything with alot of flavor such as Chix alfredo, lasagna, taco meat...Are more appealing than chicken nugget or cereal. Increase or decreased in activity level: Increased sleep. Brielle will usually sleep 12 hours at night and take 2-3 2.5 hour naps per day and then 1 hour nap. According to her ped, a "normal" 18 month old take 1-2 naps a day. Little signs, but they all lead to it. Brielles worst SID is on her feet and chest. My "Theory" and OT doesnt disagree with me, is that she had soooo many heel pokes (And has quite the scars to prove it!) she doesnt want anyone touching her feet! The nurses actually warned us of this in the NICU already. Her chest?? Not sure since she hasnt had any surgery on her chest. Maybe the leads???? Not sure where that one came from.

Wednesday we had her RSV shot. Number 2 this winter. Dad was unable to make this appt so I went by myself. Uhm, Ya! Probably wont happen again. The nurses always seem like they are in a hurry, as they usher you in a room, tell you to get undressed so they can weigh, rush off to get a new baby, put them in a room, come get you, get weight, go get new child, give shot, They are ALWAYS running! So anyways, I went to put her on the scale and she FREAKED.Out!.! She was trying so desperately to get in my arms they couldnt get a proper weight on her. So I had to try to force her to lay there which wasnt going to happen. After a minute she finally just caved and layed there and cried and we got the weight. Imagine that, From 2 weeks prior NO FREAKING WEIGHT GAIN! UGH! But I guess atleast she didnt lose any. So we get back to the room and shes fine playing what have you. I got her pj top on and put her coat on since I knew after the shot shes NOT a happy girl and hates putting her coat on anyways. The nurse took awhile to come back in. When she came back in, Brielle immediately FREAKED out once again! She wasnt even on the table and she was already crying. Talk about feeling like a shit ass mom when you have to lay your screaming child down to be pinned down by the legs to get poked not only once, but twice! I felt horrible!! I know the shots are the best thing for her but damn it makes me feel horrible to put her thru that! This poor child has been thru more crap than most adults have in their 40s!!! And then when I went to put her in the car she grabbed my jacket and put her head on my shoulder. AH! Talk about feeling bad for not being able to cuddle!!

Then Thursday we had to go down to Milwaukee to see a pediatric orthopedic about the never ending hip clicks. Josh lays her on the table so the doctor can just rotate her hips....Flips out!!!!! It amazes me how their little minds are sooo mature to know or remember certain events. The conclusion of that appointment was that Brielles hips look great. Hip Displasia out of the question as she is now too old and would have had it already. YAY! He said that she is a prime candidate to develop some sort of neuro muscular problem down the road, but it is much too early to tell if that will or will not happen at this point in time. He said that she has some soft tissue in her hips that is causing the clicking. But nothing to be alarmed about. He basically told me to ignore/forget/discard/try not to get excited about the clicking. YA okay! Everytime she clicks/pops/clunks etc I cant take it. It feels so prominate it hurts me! But I did ask him if she was in any pain and he said absolutely not! Okay, thats all that matters! As long as she doesnt feel it, Ill learn to "get over it!" Of course Josh had to say "Told you she was alright." Maybe she is. Maye I thought she was. BUT as a mother, it is NOT okay for me to not check up on any concern I have. If I would have waited a year and went in and he said "O if we would have caught this sooner......." I couldnt deal with myself. I guess from the gecko we've always had to cross our Ts and dotting our I's with her and I just keep doing that. I dont want to miss anything that can be fixed, slowed down, or altered in an way! Im trying my damnest to give my little miracle the best life possible! She deserves the best!

Saturday, December 10, 2011

Thank you everyone!

So my mom pointed out to me today, after talking to two former NICU parents she ran into, that I need to start blogging more. My words, not hers. I guess for myself, I thought not many read anymore. But looking at my "Stats" page and people commenting to me about peices of my blog, and people telling family they love to read the blog, I owe it to everyone of you that have kept up and keep reading my venting, good news, bad news, important, not important BLOGS! To those of you that are keeping up with our life and enjoy reading, THANK YOU! THANK YOU! THANK YOU! I enjoy blogging. I love it for a few reasons.

1. Its my "therapy." I get all my feelings out and on paper and I dont have to bottle them in.

2. I cant forget to tell people things!! I feel like my head is being filled up with helium and Im trying to weight it down. There is so much going on, and so much to remember, I cant keep up! So its a good place to put it all down and I can look back if I forget or I can tell people to just read the blog! Plus, more so when we were in the hospital, I dont have to call 10 people and repeat myself time after time. Sometimes Im just exhausted from the inital news, or what have you, and I dont feel like telling anyone! So its just to have it out there so anyone can read our latest and read in their convienience!

3. I love the fact that I will forever have this and it is something that Brielle can eventually read! (And know WHY her father is gray at 30!)

4. I hope that my blog reaches out and touches atleast one person! If I can some way, some how touch one persons life, My job is done! When my water broke, I was clueless! You are supposed to carry to 40 weeks. I was 20. I had always heard you had to deliver that baby 24 hours after your water broke. I was 20! I knew my babies wouldnt survive. When faced with the question to terminate, YES never crossed my mind. I wanted these babies in the worse possible way. I would not give up. But there are alot of women out there that do. If one of those women find my blog, and do not terminate due to pProm, My job is complete! I want the information OUT THERE! Which is why my blog is public.

We had Brielles 18 month check up Monday. This appt didnt go as well as her others! She lost weight from her 15 month appt. No gain. LOST! She is 19 lbs 2oz. I kinda knew this as she was 19lbs 4oz 2 weeks ago at her RSV appt. But as I was talking to her PT today about it she said that CP kids do loose weight as they have low muscle tone so it takes SO much MORE to do the little things, like walk. She burns more trying to do those things. Ok, Makes sense! And I did read that from another CP mom. Dr. Krainik wants me to bring her back in a month and see where she is at on the scale etc. Hes not toooo toooo worried about it YET, but wants to watch her closely. My worry is, I have been journaling now what she is eating (just in case, cuz Im a freak like that!) and now that its on paper, its not alot of food! So Im hoping its more so that its the muscle tone and NOT eating habits. This girl used to be such a good eater, sometimes downing 2! hot dogs at a feeding and a whole can of oranges! to skipping lunch or dinner most days. :( I just dont want her to loose too much weight as I know its important for development.

Ive been putting Brielle on the big girl potty! Shes pooped 5 times so far by herself on there!!! Since we started it about 2 weeks ago, she hasnt pooped in her diaper. Shes pretty proud of herself!! She quite funny, Josh told her to "Grab your ankles" while trying to push, (remember this girl is constipation QUEEN!) so now, her Que that she has to go, she pulls her ankles up when shes sitting. Its cute! But lets us know too! :)

The other night I was changing the birds water and I had just taken down the baby gate on his door, and set it outside his door against the closet door. I grabbed the water dish and headed out the door. Brielle had followed me in there, so I just turned her walker around and scooted her out the door. I cut the corner too short as I was stepping around her, and took the baby gate out with my right leg. The metal part grabbed my leg right above the sock and dug in and I went straight down on the wood floor. There was no time to even catch myself. I fell hard. The water went flying and down I went. Brielle of course FREAKED right out, crying hysterical. Josh was trying to roll me as I was face down. I thought I broke my leg it was that bad! I told him to not touch me and go get Brielle. Brielle was still freaking out so I knew I had to just suck it up and get up because she was panicking now. So I sat up and took off my drenched sweater. Josh set her down to come by me and she couldnt get by me fast enough. She got to me and hug me so quickly and......PATTED MY BACK! AWE I cried even harder then!!! It was like "Its okay mommy!" :) My little girl!! OOOO how I love that little girl!! She wouldnt stop giving me hugs, it was freaking adorable!! 2 bruised knees later and quick the mark on my leg, I learned how caring my 18 month old is!

Yesterday Brielle took 4 steps unassisted!!!! She is a maniac with her walker!! Now by walker I mean a push behind toy. She whips that thing around to go wherever she wants. We take it everywhere with us as you can tell she is truly proud to be able to walk and the freedom to get around. Physical therapy was going to put her in a walker that we special order but because she does sooo well with the cheapo $3 rummage sale find walker they just left it at that. She even has walking with it going backwards down! She has even mastered running with this walker! She still trips and falls, but shes not discouraged and she gets right back up and goes at it full force again. Her orthodics come Dec 20, so Im hoping then she will get walking down pat. I know that she is going to LOVE the walking with nothing to hold on to. She always tries to set her dog on the walker handle and go with him, but he always falls and then she just pushes it with the walker. The other day I was Not feeling good so I just layed on the couch and she had free rain of the house. She was an angel!!! I was very proud of her! Only once did I see the whole entire tree shaking like crazy! The dogs were fighting so I told her to break them up. She did!! I was impressed! She whipped her walker around and went full force between them! It was quite funny! The dogs were like WTH just happened! But it stopped them! hehe

Today was Brielle intervention christmas party that her therapists all put on for the kiddos. Brielle did not like santa one bit!! She wouldnt even go close to him!! It was nice to see other kids with special needs. Other kids with walkers. Other kids her age not walking etc. Makes us SEE were not alone one bit. It kind of puts me back in reality as well. There were 3 kids in wheel chairs. Cute as a button! But it totally made me question why I think I have the right to be sad about my 18 month old thats not walking yet. But then I think back to the training class I had to take to be a parent host in the NICU. They taught us that everyones "WORSE" and everyones "GOOD/OK" are different. A minor hernia surgery, where the baby goes home THAT day, like Brielle had, may be the worst thing for one parents and Ok for the next. Everyone views situations differently. Alot of people tell me how strong I am. How they could never lay in the same bed for 3 weeks and never get up. How they could never do a 98 day NICU stay on top of the 3 weeks. How they could never handle a baby on oxygen. How they could not do all the therapys, Drs, or CP diagnosis. My answer is, yes you can! Yes.you.would. Its easy to just give up. Its easy to just walk away. Its easy to not try. Trust me, there are days where I could just crawl in a hole. But what good would that do? If I wouldnt have layed in bed, Brielle probably wouldnt be here. We didnt have a choice to do a NICU stay. I think when your in the position, you go into survival mode. PLUS, the NICU staff, Drs, nurses, and respirtatory therapists were AMAZING! We only had one nurse that we had problems with, and that was taken care of right away, The rest were amazing! We could not have asked for better care! Not only care for Brielle, but us. Alot of those nurses became our friends and second mothers! They seen us in our best place possible, but also were there to hug us at our worst moments ever. We cant ever repay them! They are miracle workers! And I have quite the smiley, happy go lucky, little girl to prove it!!