The Flu

Well... Mia made it thru the MRI ok but she could not escape the flu. Thankfully it is just the normal flu and not the H1N1 strain. Mia went to the Dr on Friday and the Dr said she needs plenty of rest and fluids. So this weekend Mia and I stayed home and our best at that. She watched some cartoons and a movie, had a few snacks and was funny to watch at times. Other times she was coughing alot and tired. While she was sleeping I was able to get outside and rake up some leaves so the kids could jump in them once they got home from Addison's 2nd birthday party. Unfortunately Mia wasn't able to go. It was a good thing Mia's Aunt Rhonda and other Momo took some video for us to watch. Not only did we get to watch the video, but her Momo made so much food that Brandy brought home a buffet. Mia decided to try a deviled egg for the first time.... she ended up eating two, she thought they were yummy. Then it was time for some chocolate cake, with chocolate frosting & pudding in the middle. To top it off was some candy letters and she just loves. I'll post some pictures tomorrow.

Dizzy Mia

Mia seemed to be a bit more drugged up from the MRI more than usual. Typically when we drive home and she gets a nap, she is good to go. However this time, she was talking funny, had no balance and would just randomly fall over. Mia was like that all nite till she went to bed around 8:30. The next morning she was all better. Now we get to play the waiting game again to hear about the results.

MRI - update

Everything went fine with the MRI today. Mia was abit sleepy afterwards but that is normal. Now she is on her way home for a restfull afternoon. Now we get to wait to hear about the results. Thanks Aunt Kiki for going with today.

Updates and another MRI today

It's hard to believe that 3 months have gone by since my lost post. I apologize to everyone who checks back for an update. Between a busy summer and our lack of Internet access at home, it does make this a little more challenging. So without further ado...

Updates;
Mia's post op check-ups have gone well above the Dr's expectations on how she has recovered. Each time he has seen Mia, he is just amazed at her body's healing ability. So very resilient.

Mia's vision however has not gotten better. Due to her latest surgery, she was not able to wear her glasses for quite some time because of the scar on top of her head that goes from ear to ear. Sadly thou, we should have been more on top of things once she was able to wear them. We will be going for another check-up shortly and at that point, Mia will get a different prescription as well as new frames so to make things more comfortable for her.

Mia is currently at the Children's Hospital for another MRI. Over the past month, she has been complaining of pain in her forehead and cheek whenever we would give her a kiss. Plus we have noticed that her cheek has started puffing out again. Thank full it is not the hard rock like before. She has also been having some discomfort with her top gums. There is a flap of skin that sits down over her top teeth. Whenever she brushes her teeth Mia has to move it or sometimes it just itches. With two issues, the doctor wanted to get an updated scan to see how Mia is doing after two surgeries.

As soon as I hear how she did, I'll let you know.

Mia's Hair cut

Tonite, Mia got her first haircut, not a trim, and had almost 10" cut off. It was very long and would take forever to brush out all the tangles. If Brandy would brush it and it hurt her, Mia would cry that she wanted me to do it. Of course this turned around if it hurt her when I did it and we would go back to Brandy. This weekend was the last straw dealing with that. So I called up Hot Heads and setup the appoitment. Now it should be better for Mia, Brandy and I to brush her hair. I miss her long hair, but her new style looks great. Mia likes it alot too and had some funny faces to make.

4th of July

Mia had a great time 4th of July weekend this year. Between the zoo, swimming, watching a parade, catching candy, watching fireworks and playing with some of her friends, Mia was having fun. It's amazing how well she has turned around since her surgery less than 30 days ago.

Post Op checkup

Mia has been doing pretty well over the past week. Her eating & drinking seems unaffected with the laser treatment they performed on her mouth. Mia's forehead and eyes got very swollen, more so her eyes. Her right eye was practically swollen shut. Everything was going well until Saturday night. She has this big frog stuffed animal that when you squeeze or smush his stomach, it makes a noise. Well, Mia was laying on her belly and rocking on the frog when she didn't stop herself going forward and smacked her head right onto the hardwood floor. OUCH!!! Brandy and I got her pain medicine and an ice pack as fast as we could move. It took alittle bit to settle her down but by the next morning Mia was back in good spirits. Her forehead however was huge, puffed up and bruised. Since then, she has slowed down alittle and only alittle.

We saw the Dr yesterday for her post-op checkup. We talked about the surgery alittle and he felt he got around 50% removed from her forehead. Only time will tell us for sure. The good news is that he said everything is looking great and she has no restrictions now. The incision is healing very well. Mia's forehead will still be swollen for a few more months but that is normal. Because of how it is growing, it made things very difficult to operate on. We just need to make sure she doesn't bump her head. The timing is perfect, Mia is going to her cousin Emma's birthday party this weekend and its a pool party. She is so excited because now she can go swimming.

She's home

Its quite amazing to watch how fast children bounce back. In less than 24 hours of Mia coming out of surgery, we were in the car coming home. It was a rough night after her surgery, Mia was not able to keep anything down water or juice. We were pretty nervous about how she was going to recover. Tuesday morning, her hat fell off from all her movement that night so the doctor came up and re wrapped it. Mia no long has a hat, but now a bandanna and she looks like Bret Michaels. After taking some pain medicine, she was able to keep some Jello down. She was excited about that because she had that pancake on her mind. Once again, she's feeding herself and drinking some juice.

After a brief nap, Mia wanted to get out of her room and take a walk. As we walked by the playroom, there were a lot of other kids who were at the hospital, all playing bingo. There were some players from the Milwaukee Wave, an professional indoor soccer team, helping the kids out. Whenever someone got a bingo, there was a pool table full of books, stuffed animals, board games, lunch boxes, dolls... big gifts not little ones. Each child had won at least 2-3 things while we were there. It was so nice and Mia was very excited the things that she picked. She got a cheerleader doll that cheers, a set of board games and a Wave lunch box stuff with souvenirs from the soccer team. The doctor came up again to check on Mia. He said that the swelling looked ok and whenever we were ready to go home, we could. Once Mia heard that, she was ready to get the IV out and come home.

She did really good once we got home. She layed on the couch and relaxed, played with her games and then fell asleep. It was the middle of the night that she woke up and had a high fever. We called the hospital and they wanted us to try to get her fever down, otherwise we would have to go back. Thankfully Mia's fever did go down and she is still home. The doctors nurse heard that we called during the night so she called this morning to check up with us. There was one little area near the incision so we are just waiting to hear back from them if we should put the bandages back on or if we need to go back to the hospital. So far, after a little bit of pain medication, Mia is doing ok.

I'll try to post some pic's tonite or tomorrow.

Recovery - part 2

After a few hours of sleeping, our little princess woke up. Mia was crying that it hurt and she wanted it off, referring to her new "hat". We were trying to get her to roll over onto her left side so her right side wouldn't swell up but Mia didn't want anything to do with that. Alittle bit later she had to go to the bathroom so I carried her there as Brandy brought along her IV trolley. Once we got back to our room, Mia was ok with laying on her left side. It didn't take long when Mia was asking for some food. We gave her the options of juice, Popsicle or some jello because she could eat some soft food. That led to "how 'bout a pancake, cause they're soft daddy?" Well, we are not pancake stage yet so she opted for a blue popsicle. Now Mia and Brandy are lying down together. So far, things are going pretty well for everything Mia has gone thru today. We should get to talk to the doctor tomorrow so we'll have some more information about how she's progressing and when we might be able to bring Mia home.

Recovery

We just talked to the Dr and Mia is now in recovery. It was a long and intense surgery. He said he was able to get some of the cyst's drained. Because of the extensiveness of the vessels in her forehead, it was difficult to work around. They Good news is that Mia should have feeling & movement of her forehead. Also they did not put in a drain because he felt they didn't need it plus it would a lot for a 4 year old to deal with taking it out and then redressing her forehead. The Dr also used stitches that he used will be absorbed vs. using staples or something that would need to be removed. As far as we've been told, the has a bandage on her head that should keep pressure on her incision and help heal. We are anxiously waiting to she her. I'll post again later tonite with more details and hopefully a picture.

Surgery in progress

Mia is currently in surgery right now. She has been in there for about 1 hour at this point and we have at least another hour to an hour and a half. Mia started crying as we left her. It about broke my heart, all she wanted was for me to lay on the bed with her.... Once again, we wait.

Waiting...

The time is here and we are in the waiting area for them to call us back and start getting her ready for surgery. Mia is having so much fun right now playing in the big doll house, with all the toys and coloring. Last night she was in such a great mood, silly goofy. We went to Applebee's for dinner where Mia had... mac 'n 'cheese. Afterwards we went back to our hotel and swam for a little while. She is in such a great mood which is great and so strong. The Dr is running alittle bit behind right now so we have to wait alittle longer. I guess that is all part of going thru this.... waiting, waiting and more waiting. Sometimes with answers others with more questions....

Surgery Info

We got the call today about Mia's surgery schedule for Monday. We need to be at the hospital at 10am and surgery should start around 11:30. Once Mia comes out of recovery, they are estimating that we will need to be there for 2 nites. If all goes well, Mia should be able to come home Wednesday sometime. Thanks again for everyones support and prayers. It is a tremendous comfort to know that so many people are there for our family.



I'll keep posting updates throughout our stay. God bless.

Vision update

Mia is doing very well with her vision. At her last eye appointment, the Dr said that she no longer needs to wear an eye patch!! What good news. Her next appointment is in three months and they will check her perscription.

MRI Results

After two weeks of waiting, we finally got the call from the doctor. He reviewed the scans, he found that vessels in Mia's cheek have started to fill up with fluid. Because they were so small and not visible, he was not able to remove them with her first surgery. Mia's forehead will be our next area that they will operate on. The scans showed that the vessels are not on her eye, just in & around her eye orbit as well as her forehead. The doctor feels that he should have good success with removing most of the vessels. By doing this, it should open up Mia's field of vision and decrease the size of the bump on her forehead.

If your curious how they are going to do the surgery, the doctor will make an incision across the top of Mia's head from one ear to the other. Once that is done, they will fold her skin down off her face so they will be able to start removing vessels... from the back side. The first time Brandy and I heard how they were going to perform the surgery, our faces hit the floor. The doctors have reassured us they do this sort of the thing all the time. Of course, they haven't done it to our daughter. We are a bit nervous to say the least.

Right now her surgery is still setup for June 8th. We will be staying up there the night before so we can get the best rest possible. We've been told that we will have to stay probably two nights. We don't have a time that surgery is scheduled yet but as soon as we do, we'll be sure to post it.

Happy Birthday!!

Happy 4th Birthday to our little princess!!

Mia had her birthday party yesterday and did she have fun. I put up a tube slide on our swing set yesterday and she wanted to be the first one down. It was funny because at the parks that have tunnel slides or dark slides, she doesn't want to go down them. Now that she has one in her backyard, she is so excited. Even Addy had a big smile when she went down it. Once we got inside to get ready for her party, Mia wasn't feeling to well. Brandy asked her if we should call everyone to let them know so they could stay home, but Mia said "I'll tell them when they get here." Brandy gave her some Motrin and that helped out. She was able to play with everyone, open her presents and even sit behind her awesome birthday cake while we sang to her. The fun stopped there thou because her fever came back, 104.8°. Because she wouldn't take any Tylenol, her pediatrician wanted to get her to ER vs. waiting until today for her to be seen. So, we drove to the ER were she took the Tylenol from the triage nurse great. Finally, her temp had dropped back down. From there it became the waiting game to actually see a Dr. Mia was crying that all she wanted to do was to come home when they eventually called us back. Turns out she has a bladder infection and possible strep. We've got some antibiotics for Mia that she will need to take 4 times a day. It's a good thing that she takes her medication good.

Once in the car, she was excited that we were going home.... she wanted a piece of cake!! After we got home and the cake was served, Mia decided it was time for the couch to rest. Her fever had started to come back alittle bit. Mia slept pretty good thru the nite and when she woke up, she hadn't forgot about that cake. It became breakfast and she said it was yummy.

Happy Birthday princess!!

A long day.... the MRI

Our day started yesterday at 4:30am (well 2:30am for Brandy who couldn't sleep). We were all checked in at the hospital and awaiting the nurse to take Mia back by 7:30am. Once they took her back it was time for me to catch some sleep while Brandy was making lists of things to do. Around 9:30 they brought us to Mia, who was just starting to come out of the anesthesia. She was alittle grumpy and quite irritable, but that was to be expected because of the medicine. The nurse then told us how she was the best patient that she has ever seen to get an IV. In the past Mia has always been put out with gas prior to them starting an IV, so this was her first time. They could not believe how well she did without crying, complaining or anything. She was telling them about her birthday party coming up and that she has three different bicycles picked out. Not only did they get the IV in, but it took two times!! None of the hospital staff could believe that our little 3 year old was so brave & strong.

Mia fell back asleep and woke up again around 11:30, she took a drink of some water and we were able to head home. Brandy and Mia both got some needed sleep on the ride home. After we picked up Addy, we finally got home at 2. Because the anesthesia was still in Mia's system, she was pretty wobbly so we needed to keep a close eye on her. She wanted to watch Santa Clause 3 and Finding Nemo while laying on the couch relaxing. Mia finally started doing better after a few cups of strawberry milk and some Taco Bell. She seemed back to normal right before she nodded off to sleep.

We are hoping to hear the results of the scans in a few days. From there we will talk to the Dr's and go to the next step. I'm very curious to see how her cheek is doing, now that it's been 5 months since Mia had surgery.

MRI & Surgery Schedule

Well Mias' MRI is scheduled for Tuesday April 28th in MIL WI @Children s hospital and she will be put to sleep for it but we should be able to come home when she wakes up.The surgery is scheduled for June 8th as of right now. There is a possibility that the surgery will be 1 or 2 weeks sooner if they have a cancellation which would be good because of the lesion in her mouth growing it looked pretty bad last night and I worry it hurts her or may become infected. Thanks again to everyone for the love and support we need it and it helps so much !!!
P.S.
Mia got her costume for her ballet recital last week ,,it is sooo cute and she was so happy!

Where to start? How about the fun stuff... we took Mia & Noah up to the Wilderness in the Dells last week for four days. They had such a great time. Picking which water park to swim in each time we went swimming to having there own bedroom with a bunk bed. Mia was so funny when it came to the wave pool. Before the waves would come, the mammoth would roar and then the waves would start. If she was playing in the water next to us and herd the sound, her face would just be in shock and run for daddy. Rich had to pick her up and either carry her or hold her in a tube. She wanted nothing to do with me during waves. Now they can't wait until next year, when we'll take Addison for her first time.

Now the not so fun stuff... We went to Milwaukee yesterday 3.18.09 to follow-up with Mia's surgeon and to re-consult about her forehead. We felt it may be growing, although we hoped it was only looking bigger because her cheek is smaller now.
Unfortunately the first thing the surgeon asked when he walked in the room was if her forehead is growing? So.. he left the room to look at her scans and pics and came back to say he feels we should schedule surgery to remove the lesion from her forehead and that her mouth already needs to be cauterized again after only 3 short months .
Our poor little Mia. This surgery is something we have feared since we first heard the way the surgery will be performed. The lesion on her forehead is much more involved and is not in one piece like the spot that was in her cheek so it will consist of a lot of dissection and it will be necessary to make an incision across the top of her head all the way from ear to ear and then pulling her skin down uhhh .. just saying it or typing it brings tears to my eyes. The surgery may be lengthy and she will have a drain coming out of her head for a couple days after the surgery and she should be able to go home once the drain can be pulled out. We are not sure yet about her hair ...although it seems minor at this point the idea of it being gone is well upsetting to say the least. Mia is sick right now she has a fever, cough and an earache. So we are going to her pediatrician tomorrow to get some medication b/c she needs to be put to sleep to have an MRI for the surgeon to see before surgery. I guess his surgery schedule is a couple months out so we don't have a for sure date yet . We are hoping that she gets to celebrate her 4th b-day her golden b-day (5.4.05) and perform in her ballet recital before the surgery. Mia is strong and she is a very brave little girl. I only hope we can be as strong for her.

Vision update

Mia had another eye check-up a couple weeks ago which went very well. The Dr noticed during Mia's visit that she wasn't struggling with her right eye like she has in the past. He told us that vision has again improved and now she only has to wear her eye-patch 3 hours a day vs. 6 hours. It looks like everything were doing so far is helping. We have a check-up appointment with her surgeon next week so I'll post again afterwards. Thanks for everyones thoughts, prayers and support.

The little Dancer

It has been some time since our last post. Mia is doing well and the swelling has gone down more. For a while there was quite a large dimple on her cheek which was from the fatty tissue they had to remove. Lately it seems the dimple is only visible when she smiles. Not sure why this is happening like this, but we going to be asking the Dr on our next visit. Mia's mouth has definitely improved since the surgery. We still like to take a peak at it just to see how its looking. All in all, she is doing very well and has started taking Pre-Ballet dance class, thanks to her "other" momo. She is so excited on her dance nights, when she puts her tights, leotard, tutu & dance shoes her smile never stops going from ear to ear. It is so cute to watch her stretch and follow the instructor. She even gets to see one of her angels, Taylor. Between her dancing, wrapping up her grandpa Ralphie and playing with her brother and sister, Mia is definitely enjoying life.