Tuesday, March 25, 2008

Glad the MRI is over...

Wow! What a day! So glad that I will be crawling into bed soon. My head is killing me. I suffer from chronic migraines and EVERYTHING triggers them. Sleep (too much & too little), food (certain kinds, going too long w/out) the weather (when the barometric pressure changes, like before it rains) and STRESS (believe it or not, ha ha)! 

I wake up and get myself all ready for the MRI. I have to force DH out of bed because suddenly he cannot get out of bed when normally at that hour he would already be at work. I read my note and oh no! I have to wake Mia up NOW or else she won't even get something to drink before we leave. I run her down stairs and try and get her to drink Pedialyte and warm liquid jello. She sipped but not too much. I run upstairs and put on her clothes and out the door. We were supposed to be the the hospital admissions office by 8:30, we're early it's only 8:15! We get all checked in and then I ran to the pharmacy to pick up vitamins. We head up the the ped sedation clinic where the frustrations begin! We tell them why we are there and who we are. They say "Oh you're early, but that's ok, better to be early." I said, no we were told to be here at 8:30 for a 10AM MRI. He argues that the MRI is at 11. I ask politely if he is sure he says yes. I still don't believe him, but at this point I give up. I mean I can argue until my a$$ falls off but it's not going to get me anywhere. We head to the playroom/waiting room where the waiting begins. A day of sitting and waiting. At one point I thought to myself, lets just forget it and go home. Mia is so tired and hungry, but being the good little trooper that she is she just goes along with it. Finally at 11:45 they call us in for vitals, almost 2 hours past the scheduled MRI time. We head down to the MRI room where I am feeling very nervous. We met the anesthesiologist and I really liked him so I felt a lot better. They drugged my poor baby so much though. It started with a shot to the arm to 'relax' her, which she cried and cried. The girl became more alert and held her body with more control than ever! A few minutes later in kicked in and you could tell that she knew something weird was going on with her body. I laid her on the bed and we went into the waiting room. 

Oh my goodness, no one could have prepared me for seeing Mia in that condition. When she had the MRI done at 9 days old she was barely sedated and was pretty much awake when we headed back to the NICU. Well, today was so different. She looked so precious just laying there, but she looked like she was in a coma. When they wheeled her through the waiting room I heard 'wow that baby is out' and I was thinking yes she is. I was told by some people that they don't put them under. Well, heck, if that isn't under then what the heck is it?! She didn't wake up for an hour! DH and I didn't say this to each other until after, but we were both scared and thought she wasn't going to wake up. The nurse kept saying she was fine and she would wake soon, we've been lied to like that before so of course we didn't believe her. When I was prego with her and was in the ER they couldn't detect the HB (I was about 2-3 mos along) and they said oh no worries, but next thing you know the head dr. is rushing in with the portable ultrasound machine. 

It was a longer than long day. We finally left the hospital at 4, almost 8 hours later. Oh and the idiot that told me my appointment was at 11 apologized and said he made a mistake we were supposed to go at 10, uh, yea I told you! Thanks alot!

We just have to wait until Friday for the results. I am trying to not think about it. The hardest part is, I have the MRI here at home with me and I am so tempted to look, but why? I picked up a copy of all of Mia's images (2 MRI's, 2 chest X-rays and 1 CT scans). A part of me wants to look, but I am too tired and I don't know what I am looking at. I can compare this new one to the old one, but I think I am better off waiting until I meet with the neuro!

Monday, March 24, 2008

It's Just the FLU!

Who knew dogs could have the flu? I certainly didn't. I was fearing the worst!! Luke isn't cleared to fly yet, but he is on antibiotics for the flu. Poor buddy has a fever and everything!!

Morning Blog...

Yes, I know in some parts of the country it is no longer morning, but when you are in Hawaii it seems as though you are just starting your day when everyone else is bringing their day to an end.  I have a lot to blog about, but haven't had the time. I am very nervous tomorrow Mia has her MRI, now I will probably be even more nervous come Friday because that is the day we get to see the 'results' and speak with the neurologist. When I was in church yesterday the Pastor asked if we wanted him to come to the hospital and be with us while Mia has the MRI, I just started to cry and I couldn't even talk. DH of course said no, which was ok, it was just tough. I cannot talk to people about Mia. Well, I take that back, I can tell people who don't care or show sympathy practically as much as they can stand to hear, but when it comes to truly genuine people I just break down. While I am nervous about the sedation I am most worried about the results, how will I handle it and of course sitting here trying to anticipate what the neuro is going to say. I would say about 99% they will give her the dx that we've expected for the past 19 months, but I really don't see it being any easier to swallow. It really breaks my heart that I even have to think about this. 

On another sad note we have to take our dog, Luke to the vet today. This is supposed to be just a physical to confirm he is healthy to fly. I am very nervous though because he hasn't been well lately and I am scared about what the vet is going to find. Last Sunday we thought he was going to die, then he seemed to get back to normal, but yesterday wasn't good. He is a Jack Russell Terrier and is very hyper and gets excited when people come over, he jumps all over them and gives them a grand welcome. Yesterday our friends came over (and he stays with them and has known them for 3 years and loves them) he was excited for just a minute or two and then he was no where to be found. DH found him lying under the table shaking. This isn't normal for Luke. He has bad allergies thanks to Hawaii and has been on steroid meds for a year and a half which have caused him to gain tons of weight. I am scared that even if the vet says he's clear to fly that he won't be able to tolerate the flight. He is going to be 6 years old in a couple of weeks, so he is only in the middle of his life, he's too young to die. 

Friday, March 21, 2008

A 'Sign'

Oh my goodness I cannot believe I didn't post this yesterday!! Mia had ST for the 3rd time yesterday. I don't care for the ST too much because she doesn't seem very knowledgeable. She asked me if I had any questions and I did. However she was unable to answer my questions, she basically said they were excellent questions but to ask someone else. Ok, thanks! Anyway, she is teaching Mia some very basic signs since she doesn't speak. Yesterday for the first time ever Mia did the sign for 'I want' and she did it TWICE!!!! The first time I wasn't so sure she was really doing it, but the second time without a doubt she DID IT!! ST was very impressed! Too bad Mia couldn't have what she wanted-the ST's gold cross necklace, but you can't blame a girl for tryin!! 

Thursday, March 20, 2008

Go to Bed I Said!

Oh I thought I wasn't going to have my bloggin time! I haven't told DH about my blog. He would not approve of me posting Mia's pictures I am sure. He is very protective of her. She isn't allowed to wear skirts or 2 piece bathing suits, not even when she was just a baby! Now, the skirt thing we do anyways since girls rule! He hasn't been home for a week yet and things have been so crazy with last minute appointments and preparing to live out of suitcases for 5 months is touch. Plus he other night we thought our dog was dying. It has been a long week already and today is just Wednesday! I will eventually show him the blog, well, maybe not show him, but tell him about it. Anyway he wouldn't go to bed and he was on his laptop right behind me while I was on the MAC. Finally to bed I said and there he lays anxiously awaiting for me to get into bed as well!

Our dog is a Jack Russell Terrier named Luke. He is going to be 6 years old next month. Since being in Hawaii he has been miserable. We thought he would love it because we have a small yard (which we didn't have a yard before, we had a balcony, but I taught him to pee off of it!) and he loves to sunbathe. Well, he has severe allergies out here. He has had them all along but a little over a year ago they got really bad and for the past year he has been on a steroid allergy pill. This has caused him to gain a lot of weight (my weight gain is all emotional overeating, I wish I had a pill to blame). He is 24 pounds! He should only be about 13-15, but certainly no more than 17 pounds. Anyway, Sunday night DH rubbed the dog and went upstairs to cut his hair and get ready for the work week. I was on the puter...go figure and Luke went to the couch to lay down. All of a sudden he comes running (very fast too) over to me and is whimpering. He jumped onto my lap and then quickly jumped off. My first thought was he got bit by a centipede. He then ran over to the couch and looked at me like, come join me. I went over there but again he couldn't get comfortable and he was all over the place. I got so scared I yelled for DH to come down stairs. He ran down and I told him something was wrong with the dog. At this point Luke wants to go out front and refuses to go into the backyard. DH puts his shoes on and I said "Do you think he wants to go out front because he doesn't want to die in front of me?" As the dog went outside he had yucky poo. DH walked him and then he had more yucky poo and then just collapsed to the ground and refused to get up. When DH picked him up he was not even fighting to get down. He came in the house and just didn't seem well. It didn't seem like it was just a belly ache. I didn't end up taking him to the vet and he seems ok now. He does need to get off the  meds and he will be going to the vet Monday.
We are canceling the appointment with the devel. doctor that was scheduled for Friday. We thought it was pointless to meet with the idiot again since we just saw him 3-4 weeks ago. Nothing medically has changed with Mia and the MRI hasn't taken place so there is no point in seeing him again. I am glad DH wanted to cancel because I really didn't like him and I certainly don't want him to be the one to give Mia her CP dx. I can't stand him! How mean is that, I don't even know him and I can't stand him. I know that isn't nice, but he wasn't nice to me! 
I have a ton of thoughts to get out, but am much too tired so instead I will go to bed and have them all rolling around in my head. Then I will wake up and feel like I was so 'busy' in my sleep. I wake up talking (in my head not out loud). I am off to bed I said!!

**I had this all ready for posting and some pop up came up and shut off my Safari and I was too tired to deal with it. Good this blogger saves the drafts!!**

Tuesday, March 18, 2008

MRI Scratched?

I have been nervous but anxiously awaiting the MRI for the past couple of weeks. It needs to be done and we've already put it off for 10 months. I recently reviewed some of the information from Mia's first MRI, which I realize makes no sense to me. I haven't tried to look up any of the information to see what it means, but knowing how I am I probably will eventually pick it apart and try and pretend I am a medical expert. Mia started to get a runny nose yesterday and I am now worried that the MRI will be cancelled. She had the sedation physical yesterday and Dr. Lantang said they have to be symptom free for a week prior. As much as I was fighting the MRI (in my head and by canceling the MRI in May) I know that we need to do it. I think we now need to have an official diagnosis post delivery (not just her HIE at birth). If we are not able to do the MRI on Tuesday we will have to put it off for at least 6 more months. DH is going to be in VA for school while Mia and I will be in SO. CAL. I certainly could not do it without him. I am already a nervous wreck. If it does get cancelled due to illness I know that it is God's plan. After I got the appointment scheduled I had this overwhelming feeling that doing to MRI wasn't right. I wasn't sure if it was just a case of 'cold feet' or if it was me knowing that it wasn't the right time. I've said many prayers to God asking him to send me a clearer more obvious sign if I was missing something. 

I cannot figure out why Mia hasn't been given a diagnosis especially given her previous MRI, birth history and global delays. I think I need to have a diagnosis now so I can begin the journey of actually accepting it. I think I could be ok with it, but until I actually hear the words "She has Hypotonic Cerebral Palsy" I can't say how I will handle it. I know that when Dr. Scurry said "I have a very real concern that she has Hypotonic Cerebral Palsy" I really didn't believe him, in part because I don't want to believe him and also because he is an idiot. Which reminds me that I have to meet with that knuckle head again this week. UGH! We met with him a couple of weeks ago and that idiot didn't even document the meeting (since I picked up her records I know). I have found 2 appointments that weren't documented both of them were devel ped appts. Interesting. 
Another interesting but annoying thing is I reviewed all of Mia's medical records and besides the two reports that
 were missing there is one from her 1 year checkup that is filled with lies. I only know for sure that 2 reports are missing and that is only because I know how many times she saw devel. ped. there may be others missing that I don't remember. But the one that is filled with lies is from a doctor that is of experience and was taking over for Mia's ped while she was on maternity leave. It says "The patient is a 1 year old female. Source of information was mother*Past medical history reviewed* Waves bye-bye, Imitates simple daily tasks, rolls a ball back to the examiner, drinks from a cup, bangs objects together, has neat pincer grasp, scribbles spontaneously, says mama or dada specifically, walks holding onto furniture, stands well alone, walked unassisted." Maybe I shouldn't be bothered by it, but 1 I never told the doctor that Mia could do those things and 2 she doesn't even do some of those things now, 7 months later. She just began to furniture walk, she certainly cannot walk unassisted let alone stand. She just started to wave bye bye, she doesn't say mama or dada specifically still. Maybe I am making too big of a deal about it, but I am not very happy with this. I don't even know who I could talk to, plus they would probably just laugh and say 'get over it' (common military solution). 

** This picture is actually from October 06 so Mia was roughly 2 months old. I bought this Anne Geddes outfit as a Halloween costume, but since it's a bunny I thought it was an appropriate Spring/Easter  Picture~

Monday, March 17, 2008

"Lifeless" She's come so far...

In preparation for our move I picked up all of my medical records from my pregnancy as well as all of Mia's medical records from birth to present. Mia spent her first month of life in the NICU. I was discharged two days after her birth. It was so hard to leave my baby! It just didn't seem fair. My mom and sister flew out to Hawaii to be with me. My mom was already scheduled to arrive, but when the birth went the way it did my sister insisted on flying in as well. I am so thankful that she came to be with me. 

I went into labor on Saturday night (at least I was pretty sure it was labor), but I didn't say anything to DH. That night I was up every hour on the hour going to the bathroom. The last hour was about 5Am and I remember thinking I was too tired to get up and I had another hour or two until I had to be up to get ready for church. As I rolled over there was a sharp horrible pain that forced me up to the bathroom for a less than pleasant number two. I think I was in there for an hour and I decided to take a bath. For two reasons, ofcourse if this was the day I wanted to shave and be clean and this was also my water labor attempt. After my bath I showered to wash my hair and then woke up DH with the news. I was hurting so fricken bad though. I then called my mom to tell her the news. Several minutes later I called my sister. Every attempt to call my dad failed as the pain was just too intense to talk. We decided that I needed to be rushed to the hospital. 

I was reading the neuro report and as sad as it made me to read it, it also opened my eyes as to how far my little Mia has come. His report: "...At the time of delivery, it appears that she was 'lifeless' and Apgars assigned were 1,6,6,6,6. It sounds as if she was resuscitated quite urgently and appropriately..." They kept checking her APGARS because they were hoping she would achieve  higher than a 6. Her 1 minute APGAR of 1 was for her heart rate and at 5 minutes she got 2 for her HR and 1's for everything else. 

I feel very frustrated at times wondering from a medical standpoint why this happened, tough I know I will never know. I also know that if we didn't get to the hospital when we did I could very well be living without Mia. When I feel sad that she can't walk or talk or do other things that 19 month old toddlers do I have to remember where she came from. I am so thankful for Mia and I know God has a plan. She continues to show progress each and everyday. She is going to be the 'one that surprises the doctors' I guarantee it!


Saturday, March 15, 2008

He's Home!

My hubby has been gone for the past 2 weeks. I was worried when he first left, this would be the first (of many) time that I was going to be alone with Mia day and night. I live in Hawaii right now and NONE of my family lives here. I was scared. She's such a good girl though, we managed just fine. To best quite honest, it was actually easier having him gone!! I made meals that were quick and easy to cook and had little clean up. Mia and I had a wonderful routine. Typically I am relieved at the end of the day when DH comes home because he takes our LO and I make dinner and have a few minutes to do other household things. Her and I would take a nap very late in the day (she would sleep 2 hours, I would sleep 1) and then she would wake up and she would have Pediasure and we would watch some cartoons. Then she would play while I made our dinner. More playing while I cleaned the kitchen. Her and I would play and then it was bath and bedtime. Now, when he was gone I was guilty of staying up waaay to late! I am talking about 1-2 am or even later! I would be going on 4-5 hours of sleep...that's why I needed that PM nap. 

Of course I am glad that he is home. It is just another adjustment to get back in the routine of having him home. Plus we have just 1 car right now which is a huge pain. We already shipped his car to San Diego and we have a good 2 weeks of this sharing thing. I am not good at sharing! It's hard with Mia's therapy and she has several doctors appointments coming up before we leave. I am so so so scared of the MRI. She has had one already, but I just have the butterflies. I wake up in the morning and feel so nervous as the upcoming MRI is my first thought of the day. Next week Mia has therapy 3 times (2 PT and 1 ST), she has a physical to make sure she is good to go for the MRI and then we meet with the horrible devel. ped on Friday. Oh how I don't want to see that guy at all! UGH! KMN! Where I was going with this is how are we going to manage with 1 car? I don't know how people do it. I was without a car for one day before he left and I was going stir crazy, the thought of having to be home all day was awful! We thought about trying to be a 1 car family, i can tell you that thought WILL NEVER enter into my mind again. No way!
Mia is so thrilled to have daddy home. Oh boy does she love her daddy! She just melts his heart. She loves me and is very close, but she is a daddy's girl. She acts so different when he is around. She wants his non stop attention and she wants him to play (she likes rough housing) for hours! He puts her down and she throws a temper tantrum. If I put her down and he is not around she will get upset but only for a moment and then she will play. I feel bad for him when all she wants to do is play, but secretly he LOVES it! I know she makes him feel so special! 

What Will People Think...

I am generally the kind of person that doesn't really care what people think. When it comes to Mia I worry so much. I worry about people talking about her abilities (or lack of) behind my back, I worry that people will make fun of her. I worry about having the conversation with people about why my child is 19 months old and can't walk or even stand without assistance. I worry that people will think I did something to cause this. I know that anyone who would talk about her, make fun or her or think I did something to cause her brain injury aren't people that matter and they certainly aren't my friends or family. 

I remember when the doctor came in to talk to me a few hours after Mia's birth he said "this isn't your fault' and at the time I was so out of it I was thinking, yeah I never thought it was. I hadn't even seen my baby yet so I really didn't know what he was talking about. I had Mia on Sunday morning and was released from the hospital Tuesday morning. I got very sick, I didn't know I was sick, I had a super high fever (which I didn't realize) and I was going delirious. I remember being freezing cold and trying so hard to get warm. DH woke up because I was shaking so bad and asked if I was ok. I would repeat myself over and over again to the point I was scaring him. I just kept saying 'I'm ok, I'm ok, I'm ok.' The next morning he insisted I go to see the doctor, which I really didn't want to do because I wanted to go and see my baby. Anyway, I went to the doctor. My incision from my c-section was fine, no breast infection, no other womanly infections everything appeared to be normal. I asked the doctor if he left something inside me, a surgical tool, gauze, etc. I was joking...sorta. He didn't laugh, he was nice, but had zero sense of humor. Anyway, this is all off topic, I was sitting in the dr. office talking to DH and crying about having to waste time in their when we could be seeing our baby. I started to worry at that point. I cried to him how everyone is going to think I did something to my baby. To this day that kills me to think that someone would think that. No one has ever said to me that they thought it was my fault, it is just my fear of thinking someone would think that. 

It is so hard because the doctors were never able to figure out what happened. I wonder all of the time why medically speaking this happened. I know that I will never get that answer, but it bothers me. 

Thursday, March 13, 2008

Good Things

I find that often when I post I might come off as the 'glass is half empty' kind of person. I'd like to think otherwise. So, I wanted to reflect on the good things. 

I am so lucky to have my little Mia. She is the most adorable (yes of course I am partial), hard working and determined little girl. All that packed into her little 18 pound body. She has taught me more in the last 19 months than I ever imagined I could learn. I love her so much. She amazes me every single day! When my mom's best friend (whom I call Auntie Maryann) got the birth announcement she said Mia had "an all knowing look" to her. Well, little did she know how right she was on that. We do now refer to Mia as the all knowing baby, well now it's the all knowing one, since she isn't a baby anymore (she's 19 months today)!!

Mia's stubborn personality and determination along with a lot of prayers has gotten her to where she is at today. SHE WAVED TO ME THIS MORNING! I went into her room and as always I said in my energetic voice 'HI MIA' and I walked to her crib. She always gets excited and wild and she looked at me and WAVED! She doesn't wave, sometimes with a lot of prodding and holding of her arm she will wave, but that isn't very often. I was so happy. She made my day! Yesterday I swore she spoke to me and said OUTFIT. Now, I can't be sure that is what she said, but the WAVE was really a WAVE!

Mia came home from the NICU when she was 1 month old. She came home with the NG tube. The doctors originally wanted to give her a G-tube, but nurse Vicki got her to take some feeds from the bottle, so they decided to send her home with the NG tube to make sure she was taking in all of the milk they wanted her to get at each feeding. When we got home the feeding tube was an issue of stress. We were always worried she would pull it out and we hated having to put it back in. DH and I also thought that she would never really learn how to know how much to eat if we would do a bottle feed and then put the rest into her NG tube, we thought that was too confusing for her. We decided to take the tube out and I would just offer the bottle even more than before. She was getting all breast milk as I was pumping like a mad woman! A short time after taking the feeding tube out my normally content, calm, quiet baby was inconsolable. She was flipping out. I was panicking because she's never been like this before. I walked her around, burped her, tried to give her the bottle, nothing was working. I just got this feeling that she wanted the 'boob', I know it sounds crazy. I had tried 2 times in the NICU with no success. I figured my hopes of breastfeeding were gone. Ok, so I have this screaming red in the face baby and I whip the boob out and guess what?! That is what she wanted! Holy mama, what the heck?! I yelled to DH OMG she latched ON! He comes running over trying to get pillows and make it all comfortable for us. So the first month of bf was very tough, she took at least an hour to latch on, my neck was killing me, but it was all worth it. I couldn't believe it, everything you read says if they take a bottle first they won't BF, not my daughter! I nursed her until right before her first birthday, at that point the all knowing one weaned me! I wasn't ready to quit but she was!

I bought a book called Teaching Motor Skills to Children with Cerebral Palsy and Similar Movement Disorders (highly recommended). This book has been very informative. Chapter 9 is Guarding Against Falls. In this chapter it talks about the parachute response and how children who fail to develop this response do not progress into independent walking. It says that this response can be taught and once it is learned it doesn't go away. It has several exercises to do to achieve this response. It starts out with easier beginning exercises and then progresses into more complex exercises. In late December I was at my parents house (stayed for 2 months during the holidays) and Mia would be on the floor playing and she would get up on her knees and put her arms up in the air and reach up high. Then she would let herself go and she would fall forward and catch herself in the crawling position. Well, we thought it was adorable of course and since she is hypotonic we thought it would be good strengthening. We never knew why she was doing it. I get to chapter 9 in this book at this is the more complex exercise in learning the parachute reflex, the exercise is called touchdown from tall knee. The exercise would call for the parent (or PT) to guide the child up into tall knees and drop down into the quad position. OMG! My kid is amazing! She taught herself the reflex! 

Of course there are more reasons we refer to her as the all knowing one, but those are the two big ones! I know that things with Mia could have been so different. I know that by the grace of God she was able to be resuscitated. I know that God has continued to answer prayers for her and He will continue to answer our prayers! She is globally delayed but she is always improving!! 

Wednesday, March 12, 2008

Basket Case

Boy lately, I just can't get it together. I find myself crying more and more. I know everyone has 'bad' days but day after day. Come on now. Get a hold of yourself, Tara! For so long after Mia's birth everyone would say 'she's gonna be fine'. I know it was meant to be encouraging while others were probably saying it to convince themselves. They would say 'she's going at her pace' or in x # of years you wouldn't even know she had a rough start. Finally I couldn't take it anymore. I said " I don't care if you think she's going to be fine, I don't care if you think in x number of years no one would know that she had a rough start. I want what every mother wants, my child to develop and achieve things naturally and like every baby does.' I just felt like my feelings were being downplayed or like my family thought I was being dramatic about Mia's situation. Which, my mom and my sister know how gloomy things were looking as they arrived to the hospital just over 24 hours after Mia's birth. I've come to realize that this is going to be a pain that I feel for the rest of my life. She can achieve milestone after milestone but this isn't going to go away. She hasn't been diagnosed yet and I have been fighting the unconfirmed diagnosis. I just can't stand the thought of Mia having CP. I had a talk with her secondary PT and she was very nice, but she basically said her confirmed dx of CP is neither her nor there. She said " Mia is still going to do what Mia is going to do. She is still Mia.' She is so right, they can label her with whatever they want to but she WILL ACHIEVE many things. She may not do it as well or as fast as others but she will do it. She is truly a hard worker and even at such a young age she is very determined.
There is a mom on the message board that I belong to. She has an older child with CP so she's been living with this for a number of years. She doesn't know me, I don't know that we've ever even posted to each others threads, but I admire her. She has said so many inspirational things and has helped me through rough times without even knowing it. I hope someday when a mom just finds out her child has CP that I can be their for her and offer support and experience. I don't understand why if CP is more common that Autism why there is so little out there. If I look things up for services for Mia the main topic discussed is Autism. Not that I don't think those parents need the support, I just find it odd that CP isn't mentioned in the same way.
I read other blogs and postings from other mothers in my shoes and they seem so 'put together' in their thoughts and writings, I feel like I ramble and make little to no sense, I am a basket case!

Tuesday, March 11, 2008

Shoes! Shoes! Shoes!

The last several days I have been overly emotional. I just can't get a grip. It doesn't help trying to find shoes that fit over Mia's SMO's. It has been a challenge for me. It's hard too because I love to buy her shoes and now I realize that a lot of the shoes that I like probably won't work with her SMO's. We had success though! I have a pair of New Balance that fit her and look nice. She has a pair of Nike, I am not sure that they fit good. I have to double check. I know she is getting sick of the off and on with the shoes. She has a pair of Stride Rite that look nice too, they cover the entire brace, but they are a little long. She curls her toes up when I put shoes on her and I don't know why. Today I went to Nordstrom because I noticed on their website that they carried a wide variety of Stride Rite and I was hoping to find a cute pair of white sandals or something of that sort so she can wear them with dresses etc. Well, as usual just because we have regular mainland stores doesn't mean we have the supply. Hawaii is notorious for running low or out of everything I need. It sucks. So, they have 1 pair of sandals and they are light pink. I think, ok I want white but this will work. Wrong, the darn velcro wouldn't close. I guess the longer I deal with these braces the more I will know what kind of shoes will and will not work with them. So, I decide to try the Pediped shoes (I already tried once last night) well, I realized they do work!! I have to put the brace on and velcro the shoe before I velcro the brace!! I feel very happy that I found a pair of shoes for her. The other shoes that I have for her are so bulky and heavy, the Pediped is a soft soled shoe and very light. She loves the braces. She was so proud of herself in Nordy's. The sales girl asked "why does she have to wear braces?" So, I told her that she has low pronation and these help support her ankles from rolling in. She said, oh my little brothers friend wears them, he has Cerebral Palsy. KMN. I am really struggling with this whole CP thing and I dread hearing that DX and I just know it is coming. I will blog about a good conversation I had with Mia's secondary PT.

I am glad Mia loves the braces. She really thinks she's neat with them. I can't help but think to the future though, what will she think when she realizes that not all kids wear them? What do I do when she realizes she's 'different'? I shouldn't worry about the future but I do. I love her so much. I can't even stand to think of her feeling bad or someone making fun of her!

Monday, March 10, 2008


So, I stole this from Suze's page, but I just had to post it. I am already emotional today, but this really made me even more emotional, but it makes me feel very understood. If that makes any sense!

Many of you I have never even met face to face, but I've searched you out every day. I've looked for you on the Internet, on playgrounds and in grocery stores.

I've become an expert at identifying you. You are well worn. You are stronger than you ever wanted to be. Your words ring experience, experience you culled with your very heart and soul. You are compassionate beyond the expectations of this world. You are my "sisters."

Yes, you and I, my friend, are sisters in a sorority. A very elite sorority. We are special. Just like any other sorority, we were chosen to be members. Some of us were invited to join immediately, some not for months or even years. Some of us even tried to refuse membership, but to no avail.

We were initiated in neurologist's offices and NICU units, in obstetrician's offices, in emergency rooms, and during ultrasounds. We were initiated with somber telephone calls, consultations, evaluations, blood tests, x-rays, MRI films, and heart surgeries.

All of us have one thing in common. One day things were fine. We were pregnant, or we had just given birth, or we were nursing our newborn, or we were playing with our toddler. Yes, one minute everything was fine. Then, whether it happened in an instant, as it often does, over the course of a few weeks or months, our entire lives changed. Something wasn't quite right. Then we found ourselves mothers of children with special needs.

We are united, we sisters, regardless of the diversity of our children's special needs. Some of our children undergo chemotherapy. Some need respirators and ventilators. Some are unable to talk, some are unable to walk. Some eat through feeding tubes. Some live in a different world. We do not discriminate against those mothers whose children's needs are not as "special" as our child's. We have mutual respect and empathy for all the women who walk in our shoes.

We are knowledgeable. We have educated ourselves with whatever materials we could find. We know "the" specialists in the field. We know "the" neurologists, "the" hospitals, "the" wonder drugs, and "the" treatments. We know "the" tests that need to be done, we know "the" degenerative and progressive diseases and we hold our breath while our children are tested for them. Without formal education, we could become board certified in neurology, nephrology, endocrinology, and psychiatry.

We have taken on our insurance companies and school boards to get what our children need to survive, and to flourish. We have prevailed upon the State to include augmentative communication devices in special education classes and mainstream schools for our children with cerebral palsy. We have labored to prove to insurance companies the medical necessity of gait trainers and other adaptive equipment for our children with spinal cord defects. We have sued municipalities to have our children properly classified so they could receive education and evaluation commensurate with their diagnosis.

We have learned to deal with the rest of the world, even if that means walking away from it. We have tolerated scorn in supermarkets during "tantrums" and gritted our teeth while discipline was advocated by the person behind us on line. We have tolerated inane suggestions and home remedies from well-meaning strangers. We have tolerated mothers of children without special needs complaining about chicken pox and ear infections. We have learned that many of our closest friends can't
understand what it's like to be in our sorority, and don't even want to try.

We have our own personal copies of Emily Perl Kingsley's "Welcome To Holland" and Erma Bombeck's "The Special Mother." We keep them by our bedside and read and reread them during our toughest hours.

We have coped with holidays. We have found ways to get our physically handicapped children to the neighbors' front doors on Halloween, and we have found ways to help our deaf children form the words, "trick or treat." We have accepted that our children with sensory dysfunction will never wear velvet or lace on Christmas. We have painted a canvas of lights and a blazing Yule log with our words for our blind
children. We have pureed turkey on Thanksgiving. We have bought white chocolate bunnies for Easter. And all the while, we have tried to create a festive atmosphere for the rest of our family.

We've gotten up every morning since our journey began wondering how we'd make it through another day, and gone to bed every evening not sure how we did it.

We've mourned the fact that we never got to relax and sip red wine in Italy. We've mourned the fact that our trip to Holland has required much more baggage than we ever imagined when we first visited the travel agent. And we've mourned because we left for the airport without most of the things we needed for the trip.

But we, sisters, we keep the faith always. We never stop believing. Our love for our special children and our belief in all that they will achieve in life knows no bounds. We dream of them scoring touchdowns and extra points and home runs. We visualize them running sprints and marathons. We dream of them planting vegetable seeds, riding horses and chopping down trees. We hear their angelic voices singing
Christmas carols. We see their palettes smeared with watercolors, and their fingers flying over ivory keys in a concert hall. We are amazed at the grace of their pirouettes. We never, never stop believing in all they will accomplish as they pass through this world.

-Author Unknown

And Then It Dawned on Me!

What a day! It started off good, which should have been my first clue. I've been back home in Hawaii for a month now. Since I have been back I have been in a terrible rut. I don't want to do things with people. I've been to church once, I've hung out with my friend twice, but other than that I would rather not see people I know. I don't mind going out in public as long is isn't seeing or doing anything with people I know. Part of the problem is I've gained weight over the holidays and I didn't have room to gain. I am not doing anything about this but complaining and gaining more weight. I had lost 20 pounds, that is back plus some! The other problem is I am getting ready to move and it is hard to say bye to people that you've built relationships and bonds with. It is going to be especially hard leaving our church. The pastor was there so many times praying over Mia in the NICU. It was so incredible too, he would come in and the nurses would flock to our side and everyone would bow their heads and place their hands on Mia. Mia was baptized at the hospital because we were just not sure if she would make it. I am also finding it increasingly hard to speak about Mia. I've always gotten choked up when I would talk about the doctors appointments and stuff, but lately I've been really emotional. 

So, as I said today started out good. I went to Honolulu to the brand new Nordstrom and Janie and Jack stores, they just opened on Friday. I met my friend Jane there. We had a nice time, talking, shopping and just hanging out. The trip was a success, I got a new outfit for Mia (like she needs any clothes), I found a pair of slipper boots for Mia (I was thinking they would fit with her SMO's), I got myself a nice Peugeot salt mill and got a great deal on some gymmies for Mia. I was pleased. I had a disgusting lunch, but that didn't even get me down, I figured I really didn't need food anyway.

 I got a call from the PT that Mia's SMO's were in and I could come in today to get them. I was glad they came in because last night Mia walked pushing a push toy!!! When we tried to get her to do it before she would stiffen up and not move. She will finger walk anywhere and she likes to cruise along the furniture, but those push toys scared her. I noticed how much her ankles rolled so I was hoping she would be getting her SMO's soon. She loves them. I will post pictures, but I didn't take any yet. I like to plan things and I like to shop. I shop a lot, probably too much, but I am pretty much an expert shopper, I buy super nice things for practically nothing, so I am actually saving DH money!! Since finding out Mia was getting SMO's I've searched for shoes. I read the boards and people were mentioning Stride Rite and New Balance. Well, wouldn't you know it Ross started getting in new Stride Rites everyday! (Yeah I go every day when I am looking for something, you have to. That's how you get the deals). I started to buy several pairs thinking that 1 pair is bound to work and I would return the rest. I bought some NB and Nike too. I think I had about 10 pairs in various sizes. I get home from Tripler and go up to Mia's room. We're checking out the shoes and not one single f'ing pair fit. I start to flip out, HOW CAN THIS BE! KMN!!! I tried on the new slipper boots, one fit, one didn't and her SMO's are the same size. This isn't right I tell myself. I got so frustrated. I was able to get the slipper boots on her!! BTW I got them at Disney for 4.99. So, great she has a pair of slippers to wear with her SMO's. I was told by her PT that one of the mom's got Pedipeds to work with the SMO's so I thought we would eat dinner and go to the store and check them out. BTW I also tried on Robeez and those fools didn't work either. 

We head over and check out the Pedipeds, yeah right, unless you cut them they will never fit. Mia has a pretty small foot and it is very narrow. I decided to go to Payless since I also remember people mentioning Payless, well, the one pair I thought would work didn't and they looked ridiculous! I am getting so upset, I want to start crying. I decide to walk over to Ross and hope they have some new shoes, nope. I decide to check some kitchen things out but as I am walking over there I just started to cry. I am so frustrated, what am I going to do! I leave Ross and go next door to Puma, they don't carry shoes in Mia's size, the smallest is a toddler 6. Great. What a waste of time. I head home!

AND THEN IT DAWNED ON ME!!!!!!!!!! Duh, people were mentioning taking out the insoles! Could this really be?! I go home, Mia needs to take a bath and go to bed. She is exhausted since both of her naps were not really naps. She's a trooper though. She's learned to appreciate shopping and trying things on. She pops her foot up and it WORKS!! Not all of them, but a couple of them!!! WOOOOOOO! HOOOOOOO! So, I give her a bath and put her to bed I said! I am going to Nordstrom again tomorrow though as I would like to try and find another pair for her. 3 pairs I have work for her, but they are pretty big so I would like to find something a little smaller!!

Sunday, March 9, 2008


By the way if you see KMN in my postings it stands for Kill Me Now!

Of course I don't really want to die/be killed it's just an expression used similar to Gag me with a spoon!!

Laugh Mia, Laugh!

Just a small post. I have so many thoughts that need to get out instead of putting one huge post I am making several little ones. I should go to bed, but what fun would that be. I will lay there with all these thoughts rolling through my head. 

I don't really need to discipline Mia that much, she is a fairly good girl and she is just now becoming more mobile so their hasn't been an issue. Well, there is starting to be an issue. I have baby gates since we live in a 2 story. I have them placed to keep her in the living room and dining room. This helps keep her from the stairs and the kitchen (she likes to get the dogs water). She whines every time I put the gate up in the kitchen. The whining continues even when I try and distract her with something else. Well, occasionally I will allow her in the kitchen so I can see her better, but then she gets into the cupboards with the fly swatter and cleaning supplies. She also began standing up in her high chair. I guess since she just learned how to do this she wants to try it every time. She also likes to come over to the computer and play with the keyboard. When she does these things I tell her "NO". The problem is when I tell her NO she laughs at me! Every single time I say "Mia NO!" She just laughs and laughs. I say it in a stern voice with no smile, still she laughs! UGH! What am I going to do?


Our neighbor invited us over for a first birthday party for their son. I am very uncomfortable about going. These people live right next door and have for the past 5-6 months, but they don't know about Mia's delays. I mean I am sure they suspect something because they know she is older than their son, they know that she doesn't walk, they know that I have her in the baby Bjorn every time I water the front yard. I just have a hard time going around people that don't know about Mia. I have stepped outside of my comfort zone and taken her to Gymboree where eventually I had to explain things. I have a hard time though because it makes me want to cry when I talk about it. I don't want to start balling to someone who I just met. If I try hard to minimally explain Mia without crying I get very wordy and start making little to no sense or I  repeat myself. 

A huge part of me wants to just get a present and skip the party since I am moving in 3 weeks anyway. I will probably never see these people again anyway. Then I think to myself, well, you can't avoid new people forever! I tried to tell my mom my dilemma, but she just doesn't get it. She said "well can't you just tell them that she had a traumatic birth and you're working on catching her up?" I said sure I can, but do I really want to? I don't. She had 4 kids, all of us developed 'normally' she doesn't know what this is like. 
I am going to have to ponder on this a little more. I haven't decided 100% either way.

Saturday, March 8, 2008


Mia has Gymboree Play class on Friday's. I signed her up about 6 months ago. She doesn't get any interaction with little kids so I thought it would be good for her. As stated earlier this is very difficult for me. I am very uncomfortable there. I feel so 'different' than the other moms. For the most part Mia enjoys it. Well, we were gone for 2 months (vacation) so she returned to the class a few weeks ago. She was scared and wasn't too sure about it anymore. We continued to go. Last Friday was awful. No one talked to me. I tried to engage in conversation with one of the mothers that has been at the class every time that I have. She was very standoffish. I was already uncomfortable being there (I gained weight so I am feeling like a pig) and then no one talks to me. I have a kid that is  3-9 months older than all the other kids, yet she is the only one not walking. (Well, 1 doesn't walk, but I suspect some sort of delay with him based on his movements). So, yesterday I was really dreading going. Nordstrom finally opened out in Hawaii and yesterday was the grand opening. I wanted to skip Gymboree and go to the mall. I didn't want to take Mia out of class because of my insecurities so we went. Well, yesterday for the first time she showed that she had a BLAST! She laughed and cruised around and just enjoyed herself. She even touched a kid on the face, arm and pulled on the little girls shirt. This is big for Mia, she has watched other kids but this was the first time she tried to engage in activity with one!! She was pooped afterwards. She ate lunch and took a nap before her PT. I was so happy that she had a good day at Gymboree. Oh yea and the mom that was standoffish last week was also very friendly. Maybe she was in a bad mood last week and I took it personal?

Friday, March 7, 2008

Could She Be Right?

I know there is such a thing as denial. I think I am pretty in touch with reality most of the time, but I also know that I believe what I want to believe. When it comes to Mia and having CP I am so confused. A couple of weeks ago we met with yet another developmental ped. I thought he was an idiot, but that is not the point. He talked a lot and talked circles. He basically told us stuff that we had already been told, hypotonia, globally delayed, possible CP. But then he went on to prove his idiocy by saying he doesn't understand why the other doctors are beating around the bush and not saying that Mia has CP. He said they are calling it Hypoxic Ischemic Encephalopathy, Hypotonia or low muscle tone instead of calling it what it really is Cerebral Palsy. 

Let me give you some background on why I call him an idiot.  We go to an army hospital which is probably our first problem, the second problem is we live in Hawaii which limits our resources. Mia had an excellent devel. ped. who we loved, he was so great. He was very positive, not unrealistic and he was understanding. He was in the military so he was deployed to Iraq. The next devel. ped. was a civilian doctor filling it at the Army hospital. He was a waste of time. He didn't even do an evaluation on Mia even though he had never seen her before. He just asked us some questions and that was that. I felt very frustrated after that appointment. We were supposed to meet with him again in November 07, but his contract didn't get renewed and the hospital didn't have a devel. ped. I was irate. I demanded to be seen at a civilian hospital with a new devel. ped. well, jokes on me. There is NO DEVELOPMENTAL PEDIATRICIAN on the entire island. So, meanwhile the army is looking for a civilian doctor to come and fill in for them. Which, brings me to the 'idiot'. So, he's an idiot because of some of the things he said, he's an idiot because he didn't even review Mia's files to gain an understanding of her and her progress. Instead he decided to read up on her for the first 25 minutes of our appointment leaving us waiting in the waiting room. This appointment had been scheduled for a month or more before we met with him. He had ample time to review files and gain a better understanding of his patient. So, now that I have ranted about this guy who doesn't stand a chance against me. I am so harsh! Yikes, back off girl! 
My husband asked the doctor why the other doctors would not be calling it CP and referring to it as other things. He started to answer and then realized there was nothing he could say. How can he speculate as to what another doctor was thinking? So, I then asked him what his opinion is (though I thought he was an idiot from the beginning I thought I would entertain myself by asking). He said " I have a very real concern that she has hypotonia cerebral palsy." Ouch! I didn't want to hear that. I came home and read and read and read some more. I just couldn't see where Mia fit into any of the CP categories. Yes, she suffered a brain injury due to going without oxygen. Yes, she is hypotonic. Yes, she is globally delayed. I know all of these things, but she doesn't have any of the other characteristics common with CP. So, I wonder...could I be in denial? Do I not see what Dr. Idiot Sees? Am I really that out of touch with reality? I know that CP has different degrees, different variations, but I also know it is possible to have congenital hypotonia and not have CP. I know that it is possible to have a brain injury and not have CP. I know that you can have CP and the brain may not reveal an injury. 
Since Mia's first MRI I have researched CP. I did a lot in the beginning and then I realized while she was still in the NICU I needed to focus on being with her and not worrying about CP. Several times over the last 18 months I have researched CP and the symptoms of CP. Sometimes I would think it was possible that she had it, other times I was convinced she didn't. About 4-6 months ago I asked her PT if she thought Mia had CP, she said 'No'. I was relieved and agreed with her. Well, today I was talking to her, this is the first time that her and I have talked since Mia met with Dr. Idiot. I told her about the appointment. When I told her about his concerns for Mia and that she has CP she looked at me in complete confusion and disbelief. She said she truly doesn't believe Mia has CP. She said that Mia's global delays are a result of her having Hypotonia, but she is showing great progress. I told her that I think the doctor wanted us to do the MRI because he wants to say "see I told you she has CP'. She highly recommends a second option if he does DX her with CP. So, is a PT qualified enough to know whether or not Mia has CP? Could she be right? I will totally seek a second opinion if he does dx her with CP. 


Mia's MRI is scheduled for Tuesday, March 25th. Now that I have the actual date set I have 'cold feet'. We were supposed to have the MRI in May and I got cold feet and cancelled it. Mia had an MRI done when she was 9 days old. I remember when the neurologist sat us down and showed us the images my first thought, was 'oh it's not that bad' but I do recall starting to cry and then I blocked out almost everything else he said. I do remember him going over the areas of the brain that had 'injury' and I also remember him mention bleeding on the brain. I do remember the neuro saying 'Likely she will have CP' He also said 'Her motor skills will be affected.' I also remember him saying 'Cognitively she'll be fine.' I don't remember anything else he said. I was just crying and crying and trying to process it. Then he said 'But of course she could be the one that surprises us.' I listened at that point and in my mind I said 'uh huh, she will be the one that surprises you I promise!' I walked away back towards Mia's crib in the NICU and I was crying and crying. The psychologist came running up to me Mrs. Neville, Mrs. Neville, I was thinking shut the (naughty word) up. She said she would like to talk to me. I just looked at her, like lady this isn't the time. I never did talk to her. I do wish I had someone to talk to, someone to cry with, someone that understands though. I don't want just some random person that hasn't walked this walk. Of course I have my husband, but we don't process and deal with things the same. I want another mother who knows the pain that I am in. 

So, I am off my original topic, but this is my blog so I suppose I make the rules! ha ha. I am being funny. See, since you don't know me you don't know that I am very sarcastic. Which, I just read in my parents magazine that I am teaching my daughter sarcasm and that it isn't a good thing to teach her, it can lead to passive aggressive behavior. LMAO! I am the kind of sarcastic that people often don't realize I am being sarcastic they think I am serious and get offended. My husband is the worst. He knows me, but he says I use my sarcasm as a back up plan when I say something completely rude to him, once I realize his feelings are hurt then I change it up with, what I was just joking! He's right, I do that sometimes!! Shh! Don't tell him!
Ok, back to the MRI and cold feet. So, after Mia's first MRI they told us that about 6 months down the road they wanted to repeat the MRI. They wanted to see if the 'injury' stayed the same or got worse. I prayed and prayed and still pray that God will perform a miracle and restore Mia's brain and the MRI will show no damage. I wanted to do the MRI for that reason, to see if I got my miracle. When it came down to it I was just too scared to put her under so we cancelled the appointment. A couple of weeks ago we were encouraged to proceed with the MRI so that we can get a long term prognosis. We decided that we should have the MRI done. I prayed a lot about it and having the MRI seemed to be the right thing to do. I suppose if I am missing the signs saying otherwise then God will have to send me a bolder sign, like the MRI gets cancelled or Mia gets sick. 
I have prayed so much for Mia. Mia has had many people praying for her. I know the prayers have worked and she has come this far because of all of the prayers. Every night when I say my prayers I say "dear God, please help Mia to not have any long term affects from her injury at birth." Up until 3 days ago I guess I didn't really realize what I was saying. I knew the neuro said she could have motor skill issues, but I guess I just thought that was something that was just going to be a slow process but work itself out. I also knew that she was at risk for CP, but I never thought of it as being a lifelong thing. I mean I know that CP doesn't go away, but what I mean is when I prayed that prayer I was never thinking don't let her have CP. It is just so hard to process, understand and deal with this all at once. I have more to write, but this blog is getting to long! KMN
Here is a picture of my little Mia on August 22, 2006 (the day of the first MRI).

Thursday, March 6, 2008

To Blog or Not to Blog?

Ok, so i see many people do this bloggin thing. I have actually created 3 blog postings on my (shh!! don't laugh) Myspace Page. It really did feel great to 'unload' everything. Something about getting all of your thoughts, feelings and frustrations out is just so cleansing. Now if my wonderful hubby was aware of my blogging I am sure there would be some laughter and snickers from him. We deal with things so different. Is it because Men are from Mars? Who knows? Anyway, I thought I would give this bloggin thing a try. As far as this page set up and the terminology goes I am such a rookie I have no idea what I am doing. 

So, ' Strong Can be deceiving' kind of has a double meaning for me. Friends say to me 'Wow, I really admire your strength' or 'Good thing you are strong' or in various ways they compliment my strength. Well, the fact of the matter is I AM NOT STRONG! I don't want to be STRONG! I have no choice but to try and be STRONG! I am so weak and so sensitive, but I can't walk around all day crying. So, I do what I have always done, put on the smile and go about my day. Little do they know how many times I cry myself to sleep or how many days I just wake up crying. Little do they know how much my heart aches and breaks. 
Mia is in a Gymboree Play class which was very hard for me to sign her up for, she started when she was 13 months old and was in a class with 6-10 month old kids up until this past month and now she is almost 19 months and is in a class with 10-16 month old kids. She is older than all the kids, yet she is the only one that can't walk and she just started to crawl. Most of the moms are nice, but I really feel uncomfortable and like an outsider. Anyway, as usual I got off topic, so when we first started the class the teacher would ask a question and would go around the circle and ask for everyone to reply. One day the question was " What is the one thing about parenthood that you never expected to feel?" Most of the moms said, frustration, love and tiredness. When it came to me my answer was " I never expected to feel so much love and have so much heartache.' It was at that point when it became so clear to me how little people understand the emotional roller coaster it is having a special needs child. While these moms no doubt love their kids, they have frustrations because their kids are getting into everything and I am siting on the other end wishing my LO would be mobile and get into everything!