Merry Christmas and a Happy New Year!

Christmas Time was a blessing for us to spend with the whole family together. With Dylan and Lilly anticipation was in the air....well, Dylan anyway. Christmas Eve we went to Paul's Grandma Baker's for supper and presents. Good food and some humorous atmosphere, as always! Needless to say all Lilly wanted to do was eat the paper ;). The Weather was terrible!!! On the way home that night a van in front of us went in the ditch, being that we had my Blazer, we couldn't pull them out, so the four of them jumped in with us. It was comical seeing the eight of us in a Blazer stuffed FULL of gifts.....but it was Christmas!
Christmas morning, Paul and I opened presents with the kids at home then went off to Paul's mother's house for Paul's Grandma Gesler's Christmas. More wonderful food and children screaming as they ran around the house with their presents.
Then from their off to my Mom and Dad's for our family's Christmas! Always eventful!! My Grandma had flown up from Oregon State for her first Christmas here (She is an AMAZING cook!!). Lilly had started running a fever and became fussy. So, more presents and we all stuffed ourselves FULL before the ride home again, to put Lilly down and calm her with all of the running we had done.
Over the weekend Paul and I unboxed all the gifts and put them away. This gave the kids a chance to play with all of the toys that they had gotten over the past few days. Lilly still had a fever and was fussy. She didn't even care to eat food?! That got me worried and the doctor was called. Nothing was done. Other than that we lounged around the house. 
Today the fever is gone and being that we are going to Milwaukee New Years Eve Doctor Forster is not worried too much, he does, on the other hand, think there is a chance of her being admitted being that she is so under weight. I am scared out of my mind!!!
With the Christmas season over and the New Year fast on our toes, remembering the struggles that we have over come as well as the ones upcoming. We, as a family, have overcome some of the most dreadful things imaginable! Happy New Year to you all and God Bless

A Failed try

We started the 4mL Captopril dose on Saturday and, let me be blunt, Lilly did NOT like it!!! By the evening, she was making strange noises and her arms and legs would tense up.....in the truck of all places. It scared the living daylights out of me!!! When we got home, I hooked her up to the pulse/ox and her heart rate was in the low 70's. Needless to say I called the Cardiologist and gave her a piece of my mind.
In the begining, I had my doubts about raising the dose, which I FULLY expressed, and it happened. I was SO VERY mad!
I am starting to get worried about going to Milwaukee because Lilly is so thin. I am afraid they will go "Oh I guess she will need to stay until we can figure it out!" Lilly will be getting alot of cookies and whipped cream this week, thank goodness it IS Christmas and the food is not in high demand.
I thought that the appt. was next Monday but I found out that it is next Thursday, At least I have some more time!

I know I AM blessed even with the struggles God puts on me, my daughter, and well, my whole family for that matter! It will be a hard few weeks, but being it is Christmas, maybe he can send a Christmas Miracle our way.....

The Cardiologist

Friday Lilly had her Cardiologist appointment in Chippewa Falls. Dr. dietz wanted another echo because the one we tried to do last time wasn't the greatest. It was a little disturbing.....Lilly's heart function isn't the greatest, that's what they told us since CHW discharge, little did I fully understand what they ment. The right side of Lilly's heart is barely pumping! So we were informed to increase her Captopril dose to 4mL to see if that helps. Also she hadn't, according to their scales, gained even 1/2 an ounce in 6 weeks....not good. We are going to mess around with her overnight feeds to try to get her gaining weight. I have a gut feeling that when we go to Milwaukee after Christmas and she hasn't gained they will keep her there!!
Dylan is SO excited about Santa and talks about him all the time. We have started with our parties and he absoultly loves opening presents!!!
Besides all that fun stuff we are just enjoying being a family for Chritmas... I know there are others who aren't that fortunate. Eveyone please remember the true spirit of Christmas.....smile and just say Hi to someone to make their day. We are ALL blessed in one way or another.

MERRY CHRISTMAS !!

To Milwaukee We Go

It's no big deal so nobody get all worked up.LOL! Lillyann's Doctors have benn asking me for a while when Lilly's check up is in Milwaukee, I just kept telling them "NEVER". But, I know that it needs to be done......so on December 28th we are headed down.
Doctor Michelle Frommelt, the Cardiologist in the Herma Heart Center, is wonderful. I know all of the nurses and the Doctors will be excited to see Lilly too. Maybe even stop to see some friends!!
Anyway, besides that, everything seem to be going well with Christmas fast approaching and time is going faster!
We actually got another 2-3 inches of snow the other night too. BURRRRR it sure is cold too, mid 20's for the high's and below zero for the low's. It makes it hard to even take Dylan outside for longer than the two minutes to jump in the truck.
Being that Christmas is around the corner it is just another time to stop and look around at all you have. Give thanks to whom needs it and be grateful. Do unto others as you want done to you and stop on the street and just say Merry Christmas to someone who looks like they are having a bad day. For one it will make them feel better and for two you will feel twice as good.

WONDERFUL WISCONSIN WEATHER!!

Man doesn't winter come fast it seems like just last week it was warm enough outside to just wear a sweatshirt....Oh Wait... IT WAS. Now down to mid 20's during the day I regret taking the kids anywhere and I have to start my truck at least 15 minutes early (I hate that, I always find myself running late because of it). And on top of that it means more chance of one of us getting sick and sharing it so well. I really do love this time of year though! All the family gets together and has a good time, I just wish Christmas could be in July or even April for that matter at least I wouldn't freeze! I will never get use to the cold!
Lilly seems to be doing better! It must have been just a bug (knock on wood) but she still has a runny nose...poor thing. She is still slowly gaining weight and Dr. Forster has said to let her eat either bottle or real food. She has been loving that! Mashed Potatoes, Gerber melts, cheese sauce, although real bananas are her fav. so far!
Dylan has been crawling into her crib in the mornings at "reading her stories" :) I don't know if I should punish him or take a picture?! He is learning tht she needs her space, she now has her bubble that he CAN'T cross or else she screams bloody-murder. Being that "Chris-er-mis",as he says, is comming her is getting excited for Santa and the raindeer, even though he thinks that we should shoot them because they're deer and he loves venison! He wants a train and I keep telling him that maybe Santa will bring him one.
Me... I have started a Mary Kay so if you need any e-mail me ; ). I figure that it gives me ADULT time which I find myself craving more and more. It is amazing how much I am having just being with positive women  and hey if I can make a few extra bucks.....YEAH!

Does These Doctors EVER End?!?

Lilly, yesterday morning, was running a temp of 102 degrees and then again at 6am. By 8 her temp was starting to climb again so I called Megan...(Dr. Forster's nurse) and beingthat  had to bring her in for another synergyst shot, she told me to bring her in.

At least Lilly had gained 12 grams this week! She still had a little fever when we got there so with the tests we went.... Blood, X-ray and urine, so far they are coming back negitive, but her White cells are up. The doctor thinks......hopes that is a bacterial infection because if we cant find a reason for the fever, it may be someting internal that they are not seeing now. I should know by this afternoon what is going on. She is still feeling crummy! She was up most of the night and is sleeping about 15 minutes at a time.  I hope I canget some rest now that she IS sleeping!!

   

A Crazy Thanksgiving!

Thanksgiving at my parents.....Holidays at my parents are always interesting! Something ALWAYS happens for example, this year the dogs got into a huge fight, my mom tried to break them up with a hard-boiled egg in her hand.... you can imagine what happened to the egg :). Then Their little dog had a puppy way too early and it ended the night on a sad note. The food.....wow I always eat way too much!! Thanks Mom and Mike for another Thanksgiving I will never forget.
Lilly was up in weight a little, 5.35kg! I know it's hardly anything but I'll take it being she hadn't gained anything since she got home!! She can sit up by herself now, it may just be for 30 seconds or so....until she realizes no one is holding her up!! She is even eating food, mashed potatoes and smashed stuffing are her favorites. Needless to say she ONLY wants food now and only takes her bottle when she is tired, so most of her daily formula is overnight now.
I started MaryKay to get me out of the house away from the kids and so I can have ADULT time which has been great. I just started but I am having fun already and the women I work with are amazing. Hey it wouldn't hurt if I made a few bucks here and there either.
Dylan is doing well, trying to get him potty trained as fast as we can. Everytime he goes potty in his diaper, he breaks out so bad that the doctor gave us some steriod cream to put on it. He is ready, just lazy! I know when he is ready he will do it w are just pushing a little harder.
My prayers continue to go out to our friends and extended family down south... we are truely blessed!

About the Doctor

The appointment today went well and found that she has a ear infection coming on. They gave her some antibiotics to prevent it from getting too bad.Also they didn't like the fact that she hadn't gained any weight so up goes her calories back to 30 to see if that gets her that wonderful baby chunk that babies are suppose to have. Other than that, She has a little cold that should go away within the next few days, it hasn't gotten into her lungs....which is good, it has stayed in her nose.

I hope everyone ha a wonderful Thanksgiving weekend! I know that my family has a lot to be thankful for...to put it in a nut shell, our son Dylan, for being the best big brother that Lilly could ever have. Thankyou to CHW staff for keeping Lillyann safe especially James Tweddell, Nancy Ghanayem, the nursing staff and Therapists.

I am thankful to our family... their continued support mentally, emotionally, and finacially. Also for you, my extended family, friends, Heart families if it wasn't for you, this year would have been a lot worse.

Heart families....Ellie, Ben, Caden, Ash, Gabbie and all of the rest I didn't mention Thank you I hope you see all you can be thankful for wether in CHW or at home. Be strong and thank you!

To our soldiers, I am thankful for you too! For keping America a place of freedom and dreams that and come true... come home safe!

Another Doctor Visit

Today Lillyann was droppedoff at Great-Grandma Baker's house so Dylan and I could do some shopping! (Thanks Grandma!) Lilly's Birth 2 Three Director, Amanda, signed my family up for a program called 'Warm the Children'. Warm the Childen is a great program where area businesses such as Kohls, JC Penney, Shopko, ect donate clothing for families that are either struggling or have had a rough year. A member met Dylan and I at Kohls and away we went! Little did I know that Kohls allowed $100 per child and we pretty much got new wardrobes for them....p.j's, outfits, socks and undies for Dlan (Hope he uses them soon!!)  They even encouraged us to get bigger size coats and clothes for them!!! What a GREAT help... THANK YOU KOHLS!

After me and Dylan's shopping spree, I noticed Lilly was coughing more and was very irritable, concerned, I calle her at home nurse. Lourie was here after 5pm calling her doctor making sure shehad an appointment for tomorrow afternoon! Lilly is a little weasy and sounds "different" to Lourie... she is hoping that it is just a virus that Lilly ha and is not due to the formula or somethng worse.
So I will update tomorrow and let everyone know how it went!

A Weekend for Hunting!

Saturday marked the gun hunting opener... and me, the first time I got my licence in 8 years! Paul and I had a sitter during the day from 5:30 am until close, which was around 5pm everynight. On Sunday about 4:30pm I shot my first deer EVER! It was only a doe, but it was MY doe... lol!! Not too bad for size either, we should get enough meat for a few months anyway. I was the only one in our family to shoot a deer opening weekend, yeah me! I will be making as much meat as I can into jerkey to send to Iraq for my brother ( that's what he said he wanted!) I will post a pic of my trophy later this week.

On another note, Lilly is doing good, still not gaining weight very quickly... she is still at 5.25kg. For almost 8months, she is really behind.... even the other heart kids! I wonder what I am not doing right that is keeping her from gaining?! She is the adverage size of a 3 month old!!!!

Other than that not too much going on just trying to maintain my sainity! I keep telling myself that I am blessed.....even when it is rough!

To all my CHW families hang in there and stay tough! To my brother Daniel, the jerkey is coming bro.... be safe and come home soon!

Time well spent...

Over the last month that Lilly has been home I have been thinking of a way to spread awareness of HLHS. So, I've spent the last few days on this video... the buffering is a little off but it is cute all the same! I hope that everyone likes it, some of the photos  are a tiny bit graphic, but not too bad ( I don't think.....but then again look what we have seen right.... LOL!)
Please continue to pray for the CHW kids! Gabrielle may just be going "H" soon.... pray for that to stick as well! Also Ben Meert's BEN efit is coming up on the 6th in Green Bay please support their family as well. You can click on his link from here to learn more about it!!

God Bless! Because I truely am!!

If the movie link doesn't work  click here
http://picasaweb.google.com/geslerfamily/Movies

A Month At Home!

Lillyann has been home a month now! WOW a whole 31 days with no real complications!!! I truely AM blessed!
Anyway, sorry just realized it....Lilly's nurse Lori came and listened to her lungs, checked weight so on and so forth. She was upin her weight and her O2 sats are in the mid to high 80's, heart rate is good... about 142 beats per minute, adverage for her. Lori is a little concerned about her lungs. With her having this cold there is mucus that you can hear, but after she coughs, it goes away. Lori said that we need to keep a very close watch on this and to never lie her flat on her back for long periods of time to prevent the fluid from getting to comfortable around her heart or lungs. She felt nessasary to call her pediatriction so he knows incase things do take turn for the worse.
Being that all of us are sick, it is almost a reality check that it may be the kilo coming back... and we know too well that if it does we will be back in Milwaukee and a surgical operation will be preformed. BUT staying positive is a MUST!
To all of my extended family Prayers are coming from 'UP NORTH' to you! Everyone else God Bless and thank you.  

November 17th 2009

Yesterday we started her Goodstart formula and she seems to take it better and it doesn't need to be so hot. So farshe hasn't taken more than she has from the Portagen/Progestamil... which is strange being that the Goodstart should taste better overall?! Lilly is still taking around 30ccs an hour, which it turn, she gets her 90ccs every three :) If that is the way she wants to do it,.... fine with me!

Also yesterday I went down to try to get some assistance with our heating bill.... it went up 100 dollars this last month. We actually qualify for some federal which will help us out a bit this winter! God knows we could all use as much help as we can this season!  i went with my mother to the courthouse and ten we did some mother/daughter bonding which was nice....we don't get that too often lately with all our stuff going on. We even did a Mary Kay makeover!!! We had so much fun!!! Thanks Mom!

Today Lilly's nurse is coming over and I am a little concerned with what she will say about Lilly's cold. Lilly hasn't ran a fever at all but she has a terrible cough and runny nose. I listened to her lungs and they sounded fine to me I just hope that they sound fine to her also. I would recommend  a stethiscope to anyone who has a child with "concern"!! It has been a comfort for me and if I think shesounds different, I take her in!!!
Anyway,I got or family pictures back and they will be going out within the next two weeks or so expect an early christmas card from me because they will have the pictures in them as well....less postage yeah I'm a little cheap LOL!

I am truely blessed and everyday I thank all of you for the prayers that hav came our way! Please continue to pray for Ellie, Gabby and Ash and for their parents to continue to stay strong!!

Friday the 13th!!!?!?!

Well, Lilly's appointment went well even though it took 3 hours! Lilly started to get tired and did not want to cooperate with the ECHO or the EKG! We didn't even attempt the EKG because she was so upset. Dr. Dietz, the cardiologist, said that her heart function wasn't the greatest but she wasn't too worried. Also she hadn't retained any more fluid building up and we are going to me extra cautious over the next three weeks because she will start "normal" formula on the 16th!

I think that the whole family is coming down with a cold! Lilly, Dylan, and I are stuffed up and sore throat. Paul actually said he was feeling kinda lousy too. I hope that it turns out to be nothing and maybe it is just the dry air... a few more days and we will feel fine!

On another family note, Paul went up north hunting for the weekend leaving me with the kids alone.... it IS the last bow hunting weekend so I figured.... 'what will it hurt'! Today on the first evening hunt, Paul shot a Doe!! Meat for My Freezer!!!  It is actually the first deer this year out of his family, let me just say that he is VERY excited and called me before the hunt was over! GO HUNNY!!

I am VERY blessed and please pray for the extended family in Milwaukee still struggling!

A Cardiologist check-up

This afternoon Lilly has  check-up with her cardiologist. She needs an ECHO and a possible EKG to check her heart funtion, it is only routine,but with her heart not being a great as they would have liked,they want to be safe. I don't think she is feeling very well today... she is not sleeping well and hs been unusually fussy.
As for my home.... back to normal! Also the PT/Speech Therapist is coming along with her Hme Nurse.What a BIG day jammed packedfull of fun and excitment!!!!
The Harper kids left this morning, they were SO happy to see their Dad and knowing that they were going hme to their home wih their toys! I was happy to have them, BUT it is nice to have my home back!!
I will update with what the doctor says...  

Another Day In The Eyes of a Heart Mom

Another day has come and gone. Lilly's nurse came out and was a little skeptical about Lilly's weight being down....again! She is hoping that she will eventually get over the 6 kilo mark within the next month. I don't know what to think really.... she eats, poops, and sleeps, well, I guess she does play more since she has been home; a big brother will do that for you! LOL!!
Amanda, our birth2three administrator came over to check on her progress. It was hard to focus with the other kids yelling and playing over-head "literally", but we got it done. She was happy with what she has accompished and is not pushing her too hard to go forward until she is ready.... until I am too!
I took Dylan to the doctors office today and while we were there I saw a baby about Lilly's age. I smiled at her mother knowing that her child will more than likely never know the emotions that I had and sometimes, like then, still do! Seeing the little girl crawling around on the floor, pulling herself up onto the chairs, I felt sad. Sad that Lilly is behind and that MY BABY, MINE had to go through all that she has and more to come that she doesn't even realize. Then the anger hit.... not only about Lilly, but all of the other kids all over that go through tough ordeals in their lives and realized that it is not fair! Finally a sense of belief, hope and love, that my child is a miracle!! She was sent to my life not to anyone else, just me!
Please continue to pray for Ellie and Gabby, Ash to keep fighting to get well and stong. And of course Caden to keep up the growing and continue to get strong and smile. I Love you all and thankyou!!

A Picture Made A Memory Cherished!

Pictures are done! Well, we got them taken today and we got the cd so her are a few cute ones of us and the kids. They actually did very well for taking two hours... and being hungery. Lilly had her synergist shot as well as a Rogam  shot, slowly we are getting her caught up! Dylan also hadto get X-rays of his leg becuase he did "something" to it, so his leg welted u ad it was black and blue today. Somehow it got infected...whatever he did... and he needed to be put on an antibiotic to clear it up. They also increased her volumes to 90 or 3 ounces, she still isn't gaining enough weight!

Om another important note, we have been home exactly three weeks today with no extreme issues!! It has been another good few dys and I still know God is blessing our house!

Please send love to our extended families in Milwaukee trying to put their families back together again!! We LOVE YOU ALL!

Talk about puting your foot in your mouth!

He's NOT camera shy!! My ladies man, Dylan

A Little R&R.....Finally!

Lilly had both her Physical Therapist and her Home Nurse visits today, both of whih went well. She is taking more food by mouth and can hold her own bottle most of the time! Her O2 stats were 92 this morning and is starting to gain more weight!! I think the reason she is sleeping better is because she IS taking more by mouth and is feeling full.
Tomorrow we are going to get family pictures done, a big moment ib this family because after a long 7 months she is good to go out in public!! I am getting a CD so I can update pics sooner!!
I am still blessed!
A SPECIAL PRAYER PLEASE SEND TO ELIZABETH POTTER, anoth Hypoplast baby girl! AND HER FAMILY WHO IS HAVING A HARD ROAD AND IS GOING TO NEED A HEART TRANSPLANT!!!!
follow her @ this link http://www.elizabethbrianne.com/
Please continue to pray for our all families in Milwaukee, and to them knw our hearts are there with you!

Good Monday

Lilly has had a good few days, she is taking more by mouth and wanting the bottle (a VERY positive thing!) and she is even rolling over all the way! It looks as if she is finally heading in the right direction. We need to go to the doctor sometime this week to get her cynergist (not sure if I spelled that right) shot to prevent RSV (a common lung disease common with preemies and "critical" kids like Lilly). She will need this every month through the flu season until she is two o three.
As for the household, we picked up two more kids for the next week. The Harper's, D.J and B.B, are staying here. It has increased the stress... I know it will die down after a couple days,but I sure love having them....that and they keep Dylan playing around and having fun with more kids to play with... they all sleep good at night lol!!
Today is a great day and I am VERY blessed!!

Happy Halloween!

Hi everyone, Lilly is doing wonderful!! She is taking about 60% of her day-time feeds by mouth. We are still allowing her to get 360cc's overnight just to try to pack on the pounds! She has been really gassy lately and we are venting and using the Mylicon drops to help.... which seems to work. Sleeping has been a issue.... not staying asleep, just falling asleep! Paul and I have tried everything we can think of and she still takes about an hour before she is out for the night.

I dressed Lilly up for Halloween (NO she did NOT go out) I just thought it would be nice because Dylan and I went out while Paul did some quality bonding with his daughter.

Doesn't she look happy with pigtails!
Mikey (sister-in-laws brother).... Brandi..... Dylan (the clown)... and Me (Vampire Bride)

OOOO SCARY HUH!!

It was nice to spend some time alone with Dylan just having fun! We only went out for three hours (which is mostly including the annual Party at the High School) but by he time we got home he was OUT! Of course he was thinking he was eating ALL the candy in one night... wasn't happening..... oh well still had fun. Please continue to pray for our extended CHW family and thank you for all the support.

Rainny Winter Dys!

How come every time it is crummy out I need to do something with Lilly?!! Lilly went in to the doctor for a rash, which turned out to be eczema, and cam out with two shots. Slowly she is getting immunized!!YEAH! She is under weight so we are going to up her volume to 75 ccs per feed (2.5 oz ) to get her weight up.
She is very gassy and Ifind myself venting her g-tube more often now than I did last week. Her doc told me to try Mylicon drops. Well see! Itherweis, things are going good! She can't get H1N1 aain this year!! still cute

Awesome Job for Lilly

Lilly gained weight!! Only 10grams hey, it's a start. I started yesterday doing a feed as she wants thing and whatever she doesn't take by mouth put over the pump. doing it this way gets about one extra feed in.... at this point....whatever keeps us away from CHW (no offence).
Lilly is doing better with her head control as well as eating her feet... :) She still refuses tummy time, but the therapist is coming out tomorrow to check things out.

It starts again!

Lilly's home health nurse, Lori, came out today and got a weight on her.... she is down to 5.34 kilos (11.7 lbs) and they are debating if we should increase her calories or her volume. I also expained that she has been more irritable, Lori doesn't know if it is the G-tube or her teething.
Dylan is drivng us up the walls "helping" us. I know that is what he intends to do, but he is making more work for me. Paul finally is feeling better and just hs a cough now.

Tankyou for the support...
Naomi

The weekend's over!!

We ha a exciting weekend! While my sister-in-law took he kids,I had the idea that I wanted to rode the horse..... until in got spooked and I went flying about 30 feet into the corn field and messed up my back! Then my brother, David, his two kids and girlfriend came over to help put tarps on our garage and do a little drinking. Andrea, my brother's girlfriend, got Lilly laughing for around 1/2 hour..... it was the cutest thing ever.
Sunday we had a family birthday and everyone wanted to see Lilly. Everyone was so happy that she was home and doing well.....until we got home that night! It was late so I was laying Lilly down and hooking her up to her feed pump that when I laid her down, her extension got stuck on my shirt and out it came. She only cried about a minute and then was laughing and talking as we drove to our local hospital. They managed to get it back in and talked a doctor at another clinic to do a contrast on her. All they did was put some barium though her G-tube to make sure it was placed right. We didn't get home until 1am this morning!! Other than that, everything is going well and the family is doing well

Winter is here!!

more interested in the toys than the pumpkin

doesn't he look so excited!

" What's in there?!?!"

Today we let my sister-in-law take the kids to her parents for a while! Oh my word, I am so nervous! I know I shouldn't be because she is a nurse and so is her mom, I still am! I know she will be fine.

It snowed here all day yesterday and while Lilly was sleeping, Dylan ad I were able to go and play! It was alot of fun being able to throw snowballs at eachother and build a little snow man. Then Paul took him on the four-wheeler to play around.... they both came back soaked!! We also carved a pumpkin last night, it wasn't very good but we still had fun! It has been nice to actually do things with the kids together this week.

The whole house is doing much better health wise! Paul is still a little sick....coughing is about it.

I am SO thankful that we got her home before this stuff started!

To the cardiologist!

Lilly had a cardiologist appointment this morning and was going to get some immunizations... that didn't happen!
We got there and Dr. Dietz looked at her and said everything looked wonderful!! Good news to us. But then came the nurse... when we took her in on Tuesday, the did a blood culture, and it came back today! It seems that Lilly had H1N1, that is why she was so sick on Tuesday, so she couldn't get any shots this time. Dr. Dietz wants us to mix the formula at 24 cal instead of 27 just for a week because of the H1N1, she doesn't want to push her tummy. The 27 cal seems to give her diarrhea....we don't need her getting dehydrated too.
Being that Lilly had H1N1, means that the rest of the family more than likely has it too! Paul has been feeling crummy the pas few days and Dylan is acting fussy lately too. I, on the other hand feel just fine and dandy..... knock on wood... we'll see how the next few days go!

At least she took it well, just a little fussy and a fever, no hospital this time!!

First week home!

Yesterday Lillyann was just not acting herself! She was running a low grade fever of 100.5 and was throwing up all morning. We called her pediatrician and they got us in quick, ran blood tests, did an x-ray and gave her he once over. Blood test showed her white count was up a smudge, everything else was normal and possibly has a viral thing.Talk about a relief, I thought for a minute that we were headed back to Milwaukee!!
Paul, Dylan and I got our H1N1 vaccine..... the nasal one smells bad!!! Anyway this morning, Lilly is back to normal and very talkative!! She wants to be the center of attention! Dylan and I are going to attempt to do something constructive......if she'll let us!! I sure did miss all of this when we were in Milwaukee!!

She's Home

After 102 days in CHW Lilly was finally sent home Friday! It has been an interesting time home just trying to get organized and back to our normal routine. But, I think we are starting t move forward. Dylan is getting used to having to share our attention with his younger sister and is "helping" out with everything from cleaning to throwing away diapers. I thank God every day for sending me two WONDERFUL children.
Paul seems to be adjusting well to having a full house again.... so am I for that matter! Lilly goes in Tuesday to start getting her immunizations and then Friday she will see her cardiologist up here. We are planning on her seeing a cardiologist in Milwaukee, but, we didn't want to go back down so soon!
Mentally, Lilly is ahead of her age with smarts... but, when it comes to milestones that include using her core, she is behind.. she will get there I have no doubts!

The start of another chapter!

Today I am starting this blog because our caringbridge site can only contain so much, with every day the space I have there gets smaller! Here I hope to include not only Lilly's triumphs and struggles, but the entire families as well.
Let me start off with what happened yesterday.... yes, I will be writing on caringbridge for a while longer but will fully transfer here!
Oh yeah, back on the topic, I received a call that Lilly was going in for another upper GI....which was done yesterday at two PM. They found out that Lilly may have a ulcer which is causing these eating issues. The doctors are not sure yet if it is true or not because she is not in too much pain so they will wait and see.