Happy Easter 2013

Well the last couple days the sun was shining and Spring was in the air. Today its chilly/cloudy with possible snow tonite. Sick of the snow!!! To start I guess Mallie's orig surgery for Tonsils/adenoids and tubes was cancelled due to her coming down with a 24 hour bug. We are now waiting for April 8th. At first I was disappointed in the wait time for a another date. But last weekend she was not feeling well and it turned into a chest cold. So probably good we are getting this out of the way now. We went to a foot and ankles specialist Friday - me hoping to get some validation we are doing everything for her when it comes to walking. I bought some stiff inserts to help her instep for her shoes. She still needs to wear her Magic dancing shoes (braces). I found some shoes at kmart last weekend that are only 1 size bigger than what she is wearing to go over the braces. hoping that will help with her mobility too! She has been standing up on everything lately and walking around - mostly with her shoes only or barefoot. I am noticing that her right foot seems to be correcting itself from the pronation more. That is encouraging to me! She was so excited this year about the Easter Bunny. "The Easter Bunny coming" she would say. Her and I decorated eggs for the first time yesterday. Tried these cups that were supposed to be no spill. Ok - not so great! Will do something different next year for sure. I also at last minute decided to make Easter dinner today. Mom came over to enjoy the disaster with us! I was a horrible cook today. Well maybe not completely. I started out burning our cinnamon rolls this morning. We could only eat half of them since the bottoms were burnt! So stupid!! At least we could laugh about it. Then I decided to put the potatoes in the crockpot today - cooked em on high for 4 hours. Well they were not done when I was ready so I tried to finish cooking them in the microwave. Oh man - these things were not going to cook. I cooked them in the microwave covered for total of 50 minutes - 10-15 increments. Still were not done. We ate them anyway and then I threw them back in the oven to finish...only to forget about them and ruin what was left. I will say the Ham was good - and it was actually done on time this year. Mallie ate none of it so she did not care. It was cheese, cracker and bologna nite for her. She surprised me the other day by eating some sweet peppers I was cutting up. She pretty much sticks to what she likes and knows most of the time. We struggle getting her to try new things. I think that is mostly normal but hers is a bit excessive I think. Thank goodness for Daycare - she eats so much more there watching the other kids eat. We have many appts and follow ups coming up this year. The big one the surgery a week from tomorrow. I will be glad when that is all over - I am worried she won't eat anything after it because her throat will be really sore. Its bad enough that she refuses what she does. Then throw this on top of it. She hates anything REALLY cold or frozen. So no ice cream or Popsicles for this little gal. Hoping to make up some yummy jello - and I know she eats yogurt. Plus we have her milk suplement so that should be a good filler. I just don't know what to expect from her in the pain tolerance dept. We have to keep her from daycare/school/public for at least a week to possibly two. She can't get sick after this surgery - very important because of the scab she is going to have on her little throat. So I repeat - I will be glad to have all this behind us. They want us to do another sleep study after too and I so am not looking forward to that! The first one was AWEFUL! This is just to be sure her apnea is taken care of. I really hope this helps her out in many ways. A restful night sleep, eating, growing - EVERYTHING :) Well that is all for now! Happy Easter to everyone!

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