Brrr.....

It has been freezing cold out the last few days!!! Today I drove to GR with Mallie on crappy roads at 7:30am. We had 3 appts today so I did not want to cancel. Once we were out of Mason County the sun came out but still icy/snowy the whole way. We made it to Grand Rapids at a little after 10am. Not bad considering 40-45 MPH was the speed most of the way. I got 20 MPG too - that is amazing!! Oh the little things, right? Ok so backing up a bit here. We had our sleep study with Mallie a few weeks ago - that was good times. Mallie did so well while they hooked her up to all the wires. There were a bazillion of them, Ok so maybe not but there were a lot. The only thing she did not do well with was the nose/mouth portion she had to wear to track her breathing while she slept. After she finally fell asleep around 10 pm I tried to sleep too. The person monitoring her for the night was really sweet but really they need to actually experience this to truly understand. So every so often she had to come in and flush the the lines to the nose/mouth piece due to saliva clogging it. In normal settings this would not wake up a sleeping person because she does not have to touch the patient, right? Well every time she came into the room she flung the door open as wide as can be to allow the bright light of the hallway to shine in both of our eyes. Now I could hear them come in too, Mallie not so much (for obvious reasons). I just don't understand why they can't keep the lights down - they woke her up once for sure - maybe a second time but she fell right back asleep. This went on all night til they woke us up at 6:30am. Plus they can't tell you anything before you leave. See pic below of her wires.

The study was Sunday night and we had an appt with Pulmonology Thursday - normally Pulm would have scheduled sleep study and this would have happened later than planned. But ENT Afman's office had the study done so we could get moving on her Tonsils/Adenoids. Of course the results were not back when we saw Pulmonology so it was a nice visit. They agreed Tonsils were big and that the sleep study would probably confirm. So another week went by and the results came in. Had to schedule appt with ENT to talk about surgery date/options. Got in the very next day - also so they could officially tell us the results of sleep study. She has SEVERE OBSTRUCTIVE Sleep APNEA. OH Great - now I can't sleep at night knowing she stops breathing an ave of 3 times an hour. I guess I did not think she had it or had it bad because she never snored. Well to me she does not sound like she is snoring. But she has always been restless sleeper and the big one is she sleeps with her mouth open at night. So in hopes that the problem is TONSIL/ADENOIDS - we are getting them out on March 4th. FOREVER AWAY!!! Also hoping this will take care of the chronic fluid she has in her ears. Adenoids play a huge role in all this - and everything is connected somehow. After this is completed - we will have to do a follow up sleep study so that we can make sure it fixed the problem. Without a full nights rest and of course being able to breathe a whole night and not cut oxygen from her growing body. It all plays a role in her growth too! Maybe a fix all??? I am very optimistic :) They have to do a certain type of surgery too because of her implants. I forget the name but one way throws a electric current thru the whole body and one does not. They are doing the one that does not so it does not mess with her CI's. Her CI doc has approved and the tubes will go back in during this surgery too. So that brings us up to till today with her appts - we had to get a Pre surgical EKG and some blood work. We were already going to be down there today for her last Mary Free Bed appt for getting her walker ordered. Then we saw the Pediatric Orthopedic doctor. Long drive - but the EKG took a hair longer to set up then it did to run it. Literally took a minute for the whole thing. She did great while they stuck leads all over her. Check that off list, then off to get the dreaded blood draw. OMG - she did amazing there too. They took a ton of blood and she never cried or whined or anything. I was so proud and amazed! She got a strawberry shortcake sticker that smelled like strawberries and a pink fish for being a big brave girl. Sad maybe but those daily growth hormone shots must have primed her for that. After that and some lunch of French fries and ketchup - (her fav) we headed over to Mary Free Bed for her final eval for her very own walker. She did awesome today in the walker. She has been wearing her AFO's (leg braces) lots more so I think that is helping. Thanks to Elaine Buskirk - I have never been more happy or thought that someone should be in our lives right now. Mallie eats at her house and drinks her special milk. Apparently does not need a laxative while at Lanie's either :) Finally took the braces there for her to put on her and she lets her put em on and wears em all day. She fought me a bit before that. It only took a day or two at Daycare and BAM - she is fine with them. So Elaine if your reading this, thank you thank you thank you!!! The ortho appt was ok - basically they took some xrays and said keep doing what your doing. At least the xrays looked good and there were no issues, right? We go back for a follow up in 6 months. The next appt in GR is her surgery so we pray she stays healthy with no colds or sicknesses by then :) The surgery we will stay overnite and be home next day. Her words are still coming along good - struggling with the P and B sounds. Still trying to get her lips together for those. She does M good with or without the lips, haha!! I know it will come - she is one smart cookie. I am posting the link to her video in her walker today - hope it works!

Our Girl is Standing up!!!

Mallie is Standing up all by herself!!

A much needed long overdue update......

Well its November 25th and woke up this morning with a light blanket of snow on the ground. As much as I would rather not have snow (mostly to drive in sucks). It really has put me in the Christmas spirit. Took some pics of Mallie yesterday for our Christmas card this year. We had a lot of fun and I was very pleased at how they turned out. I stole the idea off pinterest. Finally actually carried out a PIN - yay!! I will post a few on the blog today :) So where do I begin with all the newest updates!! Its going to seem a lot like rambling because there is so much new information. So bear with me!! We have had a few appts since the last time I updated. We did follow up at the CI dr's office for her tubes and then happened to get in right away that day to see one of his partners about her mouth breathing (tonsil/adenoid consult). This was in August, yikes, its been awhile. I was not impressed with this guy as he seemed more turned off from helping us because she is so small. Saying they don't like to do that kind of surgery on kids under 2. Hello, she is 3! Plus she has been thru like 5 other major surgeries, no problem...Not that we want more surgeries. I just want answers and resolution on why she mouth breathes and why she has such THICK fluid. So he basically made up his mind before even examining her. Said well when she has to have tubes again we will see then and maybe do it all. WTH? So I set out for a second opinion...got a referal to Dr. Afman (he did her very first tubes). He also works with NICU babies all the time so her size is not going to be an issue :) Ok so then we met with the Neuro - Develpment team in Sept - It was a very good informative appt. After leaving there it did feel like we are starting all over again with drs, tests, etc. She is three and not walking yet - so she referred us to Mary Free Bed for AFO's (leg braces) and a Walker eval - Tools to help her get Walking! Also referred us to Pulmonology (sleep study and breathing) This is too follow up on that mouth breathing ( appt not set until Jan sometime). We will need to get a sleep study to see if she does have Apnea :( Lastly, she referred us out to a Pedes Ortho doc. We see them in January too. This is to keep an eye on her bones, alignment, etc because of her not walking yet. So we did get into Mary Free Bed and get fitted for her AFO's. She did AWESOME at the appt - they had to throw on quick fiberglass cast molds to send off for a custom AFO. Had to one of them twice. She never cried or anything. She was a very big girl!! Those came in 2 weeks ago - so we set up for the Walker eval that day as well as DR AFMAN ENT follow up on her tonsils/adenoids/Mouth breathing. 3 appts in one day and back to back! Steve was leaving for Canada the next day, he needed to work, So Grandma Mary came with us. It was a good day and her coming along made it much smoother. Thank you MARY!! So the leg brace appt was first - she did pretty good letting him put them on. SHE does not like them tho, haha! Gotta get her used to them. They are very hard to get on and she does not help you while trying to get them on. Making a very ticked off little girl and frustrated momma! The walker eval was awesome! The therapist there showed us so many things we can do to help her. She did not think Mallie was ready for a walker just yet - we need to work on balance and standing first. We were so impressed with how the hour long session went - I asked if we could come back some more. We are down there all the time anyway. So we have 4 more appts with the PT's there! One next Friday in fact :) After that we flew over to Dr Afmans office. He said everything I described does sound like Apnea. That LOUD snoring does not have to be a factor. that bothers me alot to think she could stop breathing while she is sleeping....so he looked her over too and said her Tonsils are bit large. He wants to get a sleep study done first to see what we are dealing with. Since we saw him before Pulmonology - he can get that ball rolling now. Hopefully we will get that over with soon! Then we schedule a surgery if needed. Her one tube is OUT already - could not see the other one because of all the wax :( We see Dr. Daniels this week so he will clean her ears out and look better. She has only had these since June I think! So we can do it all in one surgery hopefully. Afman can do those too! Oh yeah and two days before these appts - While Grampa John was fixing our shower - he drilled a hole in our closet to get to the back of and found MOLD! Absolutely disgusting, IT WAS BAD!!! Serve-pro said Months...so who knows how long but that was probably contributing to Mallie's fluid in her ears. Now that its all gone I am hoping to see a light at the end of the tunnel on that. Ok, we did see her Endo doc again and she said doing good on everything - still wants her to eat more. Try to up her hormone - but the next day after that she was a beast again. I still think it effects her somehow. This week we have the CI - tube surgery follow up and PT - then her ophthalmology appt. I am little worried about her eye appt. Last time we saw her she mentioned Mallie had higher pressure in her eyes. You can see it because her eyes are puffier and don't seem to open as wide as they should. This makes her have the appearance of being tired. Everyone always says - oh you look so tired little one. Well its just her..... She was not overly concerned as she said it could just be her. They need to monitor it tho because it can be a sign of Glaucoma. It can lead to blindness, etc if not addressed. If it gets really bad, I mean. I guess will see what she says Friday. They have to dialate her eyes - that will be fun! As for everyday life - Mallie never ceases to AMAZE!!! her speaking is getting better all the time. She is doing great with that. She is almost 19 pounds and she is about 32 inches tall. Pants have to be 18-24 month for Length but most 12 month shirts and dresses fit her great. Almost out of baby clothes. Although I think 24 months is still considered infant in some cases. I have been trying to get her to wear the braces every day for a 10-15 minutes at a time. They are only meant for when she is standing really so the time with them will be limited for awhile. I hope everyone had a great Thanksgiving and looking forward to Christmas this year!!

Fall Pics 2012

Wanted to post a few pics of us at Lewis Farms and the Pumpkin Squash field a couple weeks ago!

A little reflection....

The weather was crazy today, rain and sun, big puffy clouds, hail!. I saw two rainbows today - one this morning and one on my way home. It is quite chilly out - kind of typical for this time of year. Waking up and moving thru the day just like most days. Except there is a significance to today. Its a day we can't skip or avoid and to most people I know its just another day. Or just another Tuesday.... For me and my family today marks 2 years since my dad made his exit on the world. I did not know what to expect today and like any other uncomfortable situations, I just go about my business and stay busy. I am kind of an avoid-er when it comes to "feelings" and letting emotion show. I don't know why I am like that but I don't like to have other people see me cry. I would rather do it in private ALONE. Although only minimal tears today, there have been random moments in the last two years where I think of him or something reminds me of him and I melt down. It is usually out of nowhere and mostly when I am alone. I am completely ok with that -as I said before I avoid showing those emotions to others. (not sure if that is good or bad) I talked to Misty tonite and both of us have had dreams of him in the last week. Also for both of us, it has been awhile since we dreamed of him and remembered it. I am sure there is something to be said for that or some meaning behind it. I do know that losing my dad 2 years ago has proved to me how short life really is. I still take things for granted in more ways than one, I think that is hard not to do most days. Appreciation for small things comes a bit easier and trying to live each day to the max potential is something I strive for. It is so much easier to say than to do - but really we all need to slow down sometimes. We need to appreciate what we have and those that mean the most to us. We need to do what makes us happy and provide all we can for our kids. Spend more time with family and those that we love. Tell those we love how we feel and don't assume that they always know. I have so many things I wanna do and need to work on , in many aspects of my life. I hope that I can work on these things for the future and not look back in 30 years with any regrets. So here is to my dad, a man who taught me so much, gone too soon, but never to be forgotten. I love you dad with all of my heart - until we meet again - rest in peace.

A letter to Mallie on her 3rd Birthday

Hi Mallie - Tomorrow you will be 3 years old, where has the time gone already? Life really does move so fast. You are forever changing and growing up! You said your first word "uh oh" in January and you have not looked back. The CI's are truly an amazing gift that we are so glad to have them for you. More and more words are coming with great success! I wanted to tell you how beautiful you are and how happy you make me each and every day. I am blessed as a mommy to have you as my daughter. I am also, so very proud of everything you have accomplished this year and I am looking forward to where you will take us next. You still light up every room and capture everyone's attention with your sparkly personality. its truly amazing and I love you so much. Happy Birthday Mallie - Love Mommy

Tubes surgery

Today we woke up at 4am to head to GR for a 6:30am arrival - 7:30 surgery time for Mallie to get her tubes put in her ears. Both Steve and I had flashbacks up getting up to Milk cows and remembered how getting up that early really sucks!! Been a long day for all of us. Out of all the surgerys she has had this one was by far the quickest and easiest. However, it did take longer than expected - Go Figure! The Dr came out and said the tube were in but it took longer because the fluid in there was like CEMENT. That sounds awesome, right? So he took a little extra time to clean them out as best as he could. Then put the tubes in....in the next breath he said that since the fluid was so thick and packed in there that part of the inside of her ear is calcified - I was so tired that I can't remember exactly what he said but we go back in a couple weeks and by then I will be drilling him again with more questions. HE said this kind of thing can be very problem-matic with kids and CI's. Any kid for that matter as the calcification would mean on a normal hearing child - they permanently damaged the inside of her ear. I try to look at the brightside meaning that she does not use that part to hear anyways but I am still mad that this happened. I feel a little bit like its my fault - I mean how long has it been in there? She had an ear infection in the spring that she was treated for and cleared. Then in June when we followed up with her CI dr he said there was still fluid in there - so another round of antibiotics. When we followed up with him again she still had it - which is why we went down today. Another great thing is that these tubes could fall out in a few months and she will need to have them put back in again - he said multiple times - ugh! He also spouted off that kids with this kind of fluid have an allergy or something and will need to follow up with our Dr here and talk about an antihistamine of some kind. He also threw out asthma as something to go along with it. Mallie is not super physically active yet for me to know if she has that....And Really? Does she need anything else to deal with. I already felt bad enough that the fluid in her ear damaged her already non working hearing parts - I suppose I should not beat myself up about it. Its very hard because it could have been prevented I think. The only thing that sucks is this type of fluid also does not always turn to a reg ear infection and because there is no pain - she never complained. OH and because she is DEAF - its not like it affected her hearing. A hearing child would have only resembled a deaf child with really thick fluid. So again I should not be overly hard on myself - but the next thing I am going to roll into makes me feel even worse. So after that little conversation - he asked if her adenoids were removed? No they have not been yet - but that will be the next thing.... her tonsils looked a bit swollen at her last check up but we thought she may have the start of cold coming on. I had my tonsils and adenoids removed when I was 5 so this does not surprise me. That was also my first and almost last surgery. Mallie has had 5 already and she is not 3 yet. So this will be another surgery.....Which I think will be good in the long run but sucks we could not have done all at once. Hell, by the time that is scheduled she will probably need tubes back in those ears again so whatever, right? I mentioned that she sleeps with her mouth open ALOT - and this is where I feel like I failed a bit after researching this. The mouth breathing has caused her gums to be irritated a bit and her lips are always dry. Plus it can cause her jaw to form in a different manner - teeth crowding - restless sleep - possibly sleep apnea. Which I don't know if she has because she does not snore. She is restless sleeper - which can make them more tired during the day -which explains why she still takes a 4 hour nap most days. I don't know how long the mouth breathing at night has been goin on but awhile and feel like I should have said something sooner. I guess I just thought it was her. What I am hoping for is removing the tonsils and adenoids - then the fluid, mouth breathing will correct itself. I just have a feeling he will go in there and something else will be wrong and he won't be able to do it or he will notice something else not quite right that we have to watch or monitor. I have been trying to stay on the most normal path with Mallie - since the first year and half was so rough. It has been really great to stride towards everyday normal toddler activities and development. Also this stuff is really so minor in comparison to what she has been thru already. I just want to have a normal childhood for her - one not spent on testing and dr appts. The last year since having her implants has been as normal as could be I guess - i am just ranting as it always leads to something else with her. I feel bad for her and its frustrating for us. Also remember me talking about her tantrums - they disappeared after I lowered her dosage back on the GH - but they slowly creeped back in. In the last 2 days she has had 3 of them. They are not pretty and disturb me as I don't know what to do . I don't know if its her being frustrated to communicate - sometimes they are for no good reason. I think when she is tired that does not help but so far I don't know how to pinpoint it before it happens. I know I will be fine but tonite I feel like a bad mom and I am little frustrated again. Tomorrow I will make the calls and line up the apts again and we will push forward like always. Things will be ok - I just need a good nights sleep and typing this out made me feel a smidge better :)