Monday, November 21, 2011

Winter is here

It is hard to believe how fast this year is going! With Dylan in school and me back to work, very few doctors visits for Lilly and more for Paul, it is hard to believe that Christmas is right around the corner. Well, let me get to it and update eveyone what has been going on in our crazy lives!

Dylan absoulutly loves school! His 4K teacher, Miss Welhofer, is new to the school and has been a great asset to the Bloomer District. Sometimes he gets home and surprises me with all of the new things he learns. Sometimes I wonder how he got to be so smart! Tomorrow they are actually making all the 4K families a Thanksgiving Feast! It should be very interesting!
Lilly had a little scare a few weeks ago. Her O2 stats dropped, around the mid 70's, and we could tell she was getting tired out easily. Dr Dietz did an Echo and thinks everything is going better than expected and has pushed the surgery back until next winter... just to get it done before she starts school (gulp). Unless she gives us real signs that she needs it. Lilly has graduated from the Birth 2 three program and is learning more everyday. I think that it is so cute when we are in the car and she starts to sing whatever is playing or she will sing Twinkle, Twinkle, Little Star that ends with the ABC's. What a personality she has!
Paul went in to the doctor ro have his hip checked out, we had been having problems with it for over a month. They noticed a heart murmer and thought an ECHO was needed, it turns out he has a hole in the upper chambers of his heart about the size of his thumb and his Aortic valve is "sticky". A Catheter and a Heart MR was done November 9th and Lilly's Cardiologist was called in by me for a second opinion. He will need a heart surgery to repair the hole and to balloon open his valve. Dr Dietz is very invoved, which is great that she takes such care of not only her patient, but her Daddy too. She is wanting to have Dr. Twiddle (Lilly's surgion) perform the surgery on Paul soon. We will know more after the "Meeting of the Minds" with Marshfield Cardiology and Milwaukee Hospital.
We count our blessings daily and thank God for all he has given to our little family! I hope that you have a wonderful Thanksgiving, and remember that those little things are sometimes the things that matter most!
Halloween- Dylan the Woody Cowboy and Lilly the Princess

Monday, July 11, 2011

Update

Lilly is doing wonderful! She final hit 20 lbs- the at home scale. Her eatting has not improved she can go through 2-3 days of barely eatting and then 2 or 3 days where she will eat all day long?! Sometimes she boggles my mind.
I starting working at a local auto shop and the kids were placed in daycare. They did very good however it is so expensive I dont know how long they will be able to stay in there.
dylan is so excited to be going to school this year! Everytime we go into Walmart he tells me he needs a backpack.
Well sorry this is short but we have been so busy! Thanks for the continued prayers!

Tuesday, May 31, 2011

Where did May go?

It has been a busy month and looking back I can't believe that May is over already. Since Lilly's GI surgery she has been doing wonderful! I have not heard one complaint about her tummy hurting anymore and the site is completely healed. I thought that she was active before.... gosh has she been moving now.

Since the last update we and pretty much graduated from the birth-2-three program. They will just be visiting once every three months to ensure that she continues to move forward. It is a bittersweet moment when you get so close to therapists and then they just go away. You are so happy to not need the help anymore and then again it is like a friend that moves away.

Lilly and Dylan have both been enjoying the spring/summer weather. Memorial day actually kicked off our first camping trip that Lilly has ever had. We stayed local (only about 10 miles from home) just to make sure that the kids could handle it. We went to a campground and parked ourselves close to the playground so they could play and we could sit back and watch. Paul and I spent to majority of the weekend fishing for, what I now found out were Mud Guppies.

Dylan will be starting a pre-4K program in a couple weeks. The school provides this to allow children to get a taste of what the actual school life will be like. The class will only be 4 days and three hours long (just as long as school will be). He is so excited!

I will be getting a full time job before long and the kids will be going to daycare for the day. I think that it will be good for both of them to develop social skills with kids their own ages. I guess we will see how it goes!

Thank you for all of your support and prayers.

Friday, April 15, 2011

Day 3

What a great day! Lilly was placed on a Full liquid diet so she was able to eat as much ice cream and chocolate pudding as she wants! Boy is she a happy girl.

We also were able to get the IV removed. Lilly was having troubles getting where she wanted to go and made a fuss about it. Now it is out and she has been running around the Peds floor (literally) and finding any toys that she possibly can. So far all of the nurses have been really good with our requests which has given me a sense of comfort with leaving her there overnight.

I really thought that we had been here, done that sort of thing. What was I thinking? It has been over a year since she has been hospitalized and I forgot how mentally and physically depressing these ordeals are. We are all ready to come home and stay there for as long as possible! Maybe tomorrow afternoon if all goes well with solid foods.

Thursday, April 14, 2011

Post surgery day 2

Lilly is doing great today. She is off Morphine and is able to have normal Tylenol to control her pain. She is still on a clear liquid diet so she has been loving eating slushies and eating ice chips. We had to distract her in order to go and eat.  I would feel too bad easting in front of her when she has been asking for a cookie all day. I hope that tomorrow she will be able to eat some real food. She certainly has her normal attitude back and will only let me hold her (daddy just does  not cut it)! I almost forgot how uncomfortable the chairs are in St. Joes Hospital.... I sure do remember now!

I will let you know how things are going tomorrow!

Wednesday, April 13, 2011

Surgery is over

Lilly was 1st case this morning and the surgery started about 9:05 am. She actually went with the Child Life lady as they counted the "funny hats" (surgeon hats). It was just enough time for us to get some breakfast before they called us and told us she was done 9:50 am or so.
She has taken this whole thing very well and has been quite a trooper. She has been sleeping most of the day and has only woke up when it was time for her Morphine. She has her normal "don't touch me" attitude and I can already see her getting back to her normal self tomorrow. She is only able to eat a few ice chips (which she doesn't mind) during the day and possibly tomorrow we will be able to start foods again.
Dc. McGill told us not to worry if she doesn't have appetite for a few days. All is well now and I will let everyone know how things go.

Monday, April 11, 2011

GI Tract surgery

Hi Everyone! I just wanted to post before we head off tomorrow night to Marshfield. We will admit her at 6:15 am Wed. morning. I will try to update as best I can throughout the rest of the week. We are hoping to be home Saturday night but we all know how that can go... However, Lilly is still really good and she even ordered her own breakfast when we went out Sunday. "Egg ummmm bacon!" So yes she got a scrambled egg and two slices of bacon and ate every bite! She has been doing really well as long as she gets what she asked for. If not, she may take a few bites and then fight with you until she can get down.

Dylan will spend the rest of the week with Paul's Grandma and Grandpa. Dylan is excited to be there and is hoping the Paul's dad will take him fishing Saturday. We'll see!

I will post as soon as I can! Please also put a prayer in for my niece tomorrow, she is having a kidney surgery in St. Paul Minnesota. We hope that this will fix everything for her!

Thursday, March 31, 2011

GI appointment

It is official Lillyann will need stitches. It is actually more like a surgery as what they told me...
This is like the picture they drew us. The circle is Lilly's stomach and the curved line is her skin. They will disconnect the tube from the stomach and the skin and then put stitches in each. They are more worried about the stitches going on her stomach because if the stitches do not hold, it can be very bad. We will be first case on April 13th and will remain in Marshfield for at least three days.
I am confident that this is what we need to do to ease the pain and restless nights. I will let you know how everything goes and please think of Lilly on the 13th!

Tuesday, March 29, 2011

Birthday Pics!

Let me thank all of the family and friends who came to our house. It was definitely crazy but a lot of fun too! Lilly and Dylan both walked away having a great time with friends and family and a wonderful night sleep! Paul set up the Barbecue in the garage and we grilled (even though it was 20 degrees outside), while the inside of the garage still smells like grill two weeks later.
It is amazing to look back on all of the wonderful things happened this year. Dylan is now able to be outside and I don't need to worry to much about him, besides getting his bike stuck in the mud. He actually helps out around the house and fixes whatever needs to be fixed with Paul. We finally got our letter and Dylan will be starting 4K in Bloomer this fall. Paul and I got him a Leapster 2 for his birthday and I can already tell the difference! He can now write his name, recognizes some numbers and letters and can add. He is ready and excited!
On April 1st 2009 Lillyann went in for her first open heart surgery. We spent that day huddled around playing cards in the waiting room.....waiting to hear about our little girl. Now two years later I can look back and not cry about the struggles she has faced, but the triumphs she as overcome and excelled in. Mostly she has beat every 24 month test they can throw at her. Even her speech is at a 30 month level (putting two or more words together) and her signs have reached at least 40. Thank you Signing Time!
I promised to put some pictures up, sorry it has taken so long! We go in to have a consult with the GI surgeon tomorrow in Marshfield. I am a little nervous but we will keep an open mind!





Sunday, March 13, 2011

Opening of a new window....I hope

Lilly's doctors appointment went good with Dr. Jermey. She is in the 25% for her height and the lower 3% for her weight (17.98 pounds). She is now done with her shots (besides flu) until school! This will make her very happy and hopefully enjoy going to the doctors again. Jermey does not think that it is wise to break her of the bottle just yet as all we can get her to eat is rice and noodles. He told me that he would rather see a few cavities then having to put the G-tube in again. She was also placed back on Prevacid temporarily to help with the discomfort along with a topical cream to keep out infections. I hope that it will work!

My fight with the insurance company failed twice. They will not pay for the 1.5 cal Pediasure now that she is off the G-tube. I, along with both Dr. Jermey and Dr. Julie Dietz have pleaded with them but it was unsuccessful. I now worry that as our stock dwindles, so will her weight. As long as she is not loosing we will be able to keep her from having the G-tube again.

Because Lilly's G-tube site is still leaking, I was able to speak with a adult GI surgeon in the Chippewa Falls area that may be able to at least do a consult and save a trip to Marshfield. I will know more this week if he is willing to do it or not. Dr. Jermey thinks that if we fight hard enough we may be able to get a anesthesiologist that is qualified to sedate Lilly if Dr. McDougall is willing to do the stitches too. I know it is a shot in the dark to ask this of a adult surgeon because Lilly is still a high risk patient.

The kids' birthday party was great! They got tons of things from the family and I think had more fun just having everyone here. I will post pictures soon. Thanks for checking in and please say a prayer for our friend 4 year old Carla Wright, she was placed onto the donor list for a heart today. Pray for a heart and the strength in herself and her family to make it through this continued HLHS fight for life.

Monday, March 7, 2011

Fighting with Doctors are GREAT!! NOT....

Lilly has had her G-tube out for 4 weeks now. They told me that it should be fully healed by now, however, it is not. Called and they want me to drive to Marshfield twice just to see if they WANT to put stitches in. NO not gonna happen! Talkin' with her pediatrician on Friday for her 24 month check up to see if we have other options.
It seemed like because Dr. Fish did not want to have the tube removed, now he doesn't really care. Yeah, he can take his job and shove it!

I will let you know how the appointment goes on Friday.

Wednesday, February 23, 2011

No News is good News!

Sorry for the updates... or lack there of! I have had nothing really big to post on. Lilly's ECHO in Marshfield went well and we have been dealing with the G-tube hole to close. Some days I think it was better when it was still in. She can be uncomfortable and the site itches quite a bit. Eating has been so-so and we still haven't inched past the 18 pound mark. She is just so active that it can be hard to get her to sit down and eat a good meal. Pork fried rice is the new fav along with dried cereal that she can eat on the run.

Speach is now coming once a month along with her therapy to improve her balance. Within the next few months they believe she will be completely caught up in her milestones. She is in love with her "Signing Time" videos and can sign "Leah" (the little girl on the video) when she wants to watch it.

A few weeks ago in Wal mart, something amazing happened. Paul and Dylan had gone into the restroom while Lilly and I waited outside. She had turned to run and ran right into a Lady (Wal Mart was packed by the way). I apologized and we started to talk. Come to find out their son was a HLHS baby (notice how I say was). He had done his Norwood when they discovered a hole between his heart chambers. The blood pushed into the left chamber and it GREW! He is now a normal baby, although he will need some reconstructive surgeries to his pulminary artery. I was in so much shock I forgot to even get their names :(.

Dylan is being enrolled into 4K and we are awaiting the paperwork. He is so excited! I have been working with him more and he can write is own name.

With Dylan's 4th Birthday and Lilly's 2nd Birthday right around the corner, I will post some new pictures as we are having their party on March 12th at 5 PM. Everyone is welcome to come if they can for supper, cake and ice cream!

Monday, January 31, 2011

Wonderful day!

Just wanted to fill everyone in about Lilly's appointment today. When we got there (in the snow storm) she was given a drug a little stronger than Benadryl called chloral hydrate. This medication was just what we needed! It put her to sleep and gave the rest of us in the room comic relief. Lilly was in a "drunken state" and could not stand or sit and giggled a lot! I cried laughing so hard!
Under sedation, her O2 stats stayed in the low 90's (awesome) and her heart rate was normal. We got a wonderful Echo which showed us that she will be able to wait until a later time to do her final Fontan surgery. She is doing so well that starting next week we are lowing her Spironlactone to once a day, within the next month or so this will be taken off altogether. Within a few months, at her next Cardiologist appointment, we will also take her off of the Captopril and onto a medication that can be taken once per day. This means that she will be on THREE medications and it will only need to be given once a day!! Yay! Lilly has made so much progress with her heart that Paul and I joke that she is "fixing herself".

Oh yeah, her G-tube is now just a hole that will close by it self within the next few weeks. We are placing Tums with gauze over the hole where the tube had been to decrease the acid that touches her skin.

After the appointment, we ate lunch, which she scarfed down, and headed home. Lilly slept all the way home and was still woozy when we got home.

Tomorrow Dylan, Lilly and I get to go see the eye doctor here locally. I am hoping that the kids sleep in so I can get some house work done and still have at least a few hours of sleep. Thank you all for the prayers and support because they have been answered yet again. I will talk to you soon with anything else that may pop up!

Thursday, January 27, 2011

A Date Has Been Set!

Monday, January 31st, Lillyann will be admitted into the Marshfield Clinic in Masrshfield. At 7:45 Am she will be sedated and the G-tube will then be removed!! They say that there will be no stiches, only Tums will be used to "suck-up" the acid until she is fully healed. An Echo will also be done along with some blood tests for her Genetic study. I am a little nervous as Lilly has not been sedated for a long time. Now that she is older, I know that this will be hard not only for the nurses, but mostly for me. I am confident that she will come out of this even more crazy that what she is going into it.
We actually opted to have her sedated to ensure that she would be in no pain and we could get a really good Echo after the G-tube is removed. I will be sure to update everyone when the time comes.

Tuesday, January 18, 2011

ER visit

Hi everyone! Last week was pretty eventful so I wanted to fill everyone in.

For all of you that know Lilly, she is a climber and loves to get into trouble...a typical 21 month old starting her terrible two's a little early. On Wednesday night, Lilly had climbed onto our dining room chair and before I was able to intervene, fell off backwards and smacked her head pretty good. I ran to pick her up because she had not cried and her eyes rolled to the back of her head. Let me just say that my heart stopped and boy did I freak out!!

She had knocked herself unconscious and the 911 call was made. Surprisingly the first responder team got here pretty quickly...so did the phone calls from our worried neighbors. Although they had stopped at the next door neighbors thinking it was them who called in, who informed them they should check to see if I was the one who made the call. I don't really blame the First responders as we have 30 some inches of snow and you can't really see the fire numbers very well. When they did arrive to our house, she was very white but was alert when they arrived but they wanted to take her in to be checked out just in case. The first responders could not have handled the situation better and both Lilly and Dylan got new stuffed bunnies from the EMTs.
Dylan was prepared to stay at the house with the first responder Rick, however Grandma and Grandpa followed Paul home and arrived just as Lilly and I were getting into the ambulance.
Lilly actually did really well on the trip to Chippewa Falls (it is an hour drive) and Rick taught her a new word, "bunny". He was really a lifesaver on keeping her still and quiet on the ride. Her O2 stats were 90 on the ride over ( I knew that was wrong!)
By the time we arrived, Her O2 stat was right where it has been, 80-85%. Lilly was back to her normal self and we could finally see the bruises from her fall. One above her ear, on her shoulder and one on her hip. Needless to say she had had some other falls that week and had fallen out of bed and played hard with Dylan. These also made "wonderful" bruises on her head; a goose egg on her forehead and one on each of her cheek bones. The ER doctor swears that Dylan is beating her up, I said "You should see my son, Lilly is the one doing the beating". This is true.... Lilly loves to be "one of the boys" and it can be funny the things she can come up with.
Anyway, all was well and she was released within an hour.

Thursdays was her Cardiologist appointment (no, we did not do an ECHO). Lilly did amazingly well and did not cry when they listened or did her blood pressure or weight, 17 pounds 14 ounces by the way!! We should be able to push back the Fontan farther.. they are now thinking around 3-5 years old. She did get approval to have the G-tube removed and we are looking into a date and I should know more by the end of the week. They will sedate her for the G-tube removal and then we can make sure that we get a really good ECHO as well, it is better for all of us. This will be done in Marshfield because our local hospitals are not equipped to handle her if something would go wrong.

Friday, we had a routine appointment where Dr. Jeremy Forster put in his two cents about her G-tube being removed. He thinks that we should get some special casts for her arms and legs, along with a helmet and make her into "Iron Baby". We all were able to get some humor out of the activity level of our dare devil.
I will let everyone know when the appointment will be scheduled for the G-tube removal. Until then stay healthy and God bless.

Wednesday, January 5, 2011

Lillys GI doctor appointment

First, let me say I am happy that the newest member of the Smith Family arrived on December 28th a Happy Baby boy, Griffin. I am so excited to be able to meet him when we get together next!

Okay, down to business. Lilly's doctors appointment yesterday went suprisingly better than expected. She is still at 17 pounds (7.72 kg) although she is eating non-stop. We have switched her off of the Lactalose ( a laxitive) and moved to a chewable Peda-Lax. So far so good and I like not needing to struggle to get her to take it! She is also in the 10% for her hight and only 3% for her weight. Once we can get her weight closer to her height, we will look into having the G-tube removed. Dr. Fish thinks theat we will change the tube out for a helmet as he witnessed her "terrible two's" fisrt hand. She climbed onto the swivel doctors chair and attempted to grab the blood pressure cuff when the chair slid out from under her and down she fell. She of course was unharmed besides her pride. I think she was more mad at the chair for moving on her...

On the 13th, we have her Cardiologist appointment along with the awaited ECHO. We will see how this goes as I really do not want to make a trip to Marshfield in the wonderful Wisconsin snow.

That is all for now, both kids are sleeping and my house is a mess!! My time to clean. Prayer to our heart families for continued health though the winter months and Congrats to the Smith Family on their newest addition!

Saturday, January 1, 2011

Happy New Year!

I am sorry that the posts have been rare lately. It has been so crazy with Christmas and working that when i do have the time, I am just so beat down that I am unable to write or update you.

November and Thanksgiving was pretty uneventful...thankful that we have all pretty much been healthy and hospital free. It made me realize where we were a short year ago. We did manage to take some family pictures ( after two different attempts...thank you Sears) and got some really good ones. My poor Blazer broke down, of course on the coldest day of the year so far, and I missed a few days of work and then the runny nose sickness cost me a few more days off.

December was very crazy with the Holidays and family gatherings approaching. In mid-December, Lillyann had a weight check...17 pounds!! Can you believe it? I know that I couldn't! We have not even used her G-tube more than twice in the last three months. And the kicker, two days before Christmas, I lost my job. I knew that it was coming but it still does not make you feel any better.

On Christmas the kids made out like spoiled bandits.. what you would all expect! We went if for Synergist (sorry if the spelling is incorrect) which Lilly will get monthly until Spring to prevent any respiratory bugs.

As for the New Year, we have four appointments in January 2011 a few for a doctors check-up and a GI check along with the attempt to do an ECHO. They will attempt to do one without sedation here at our local office, but if she doe snot allow it, they will do a sedated ECHO in Marshfield Wisconsin. This ECHO is so important as this will give us a better idea of how her heart is working and if any medications need to be adjusted.

We pray for all of our heart kids and families  daily and hope that everyone has a happy and healthy New Year to come. A big and warm wish to the Smith Family for their Baby number two!!! Hope that you enjoy the pictures!
Kix works wonders for quiet kids!
this picture wasn't planned. Just started snapping them
Dylan being Dylan

Cute as can be!