MRI

Mia was such a big girl getting her IV put in , so proud of my pumpkin ! The IV is just for the contrast . She is having her MRI now and she's awake !  This is her second MRI being awake! I'm in the waiting room this time so I could be by my phone .... because the high school nurse called and Noah hurt his shoulder she thinks he may need to see a Dr ...of course he does....lol.  I'll update again later !

New Medication

Mia saw her pediatrician Friday for a pre-op check . She also got a flu shot we are not normally flu shot people but the Dr highly recommended it because of the new med . He also said this medicatin is a very big risk for something that may not even work.... but that he understands and hopes that it does work for Mia. He just emphasized the necessity of extreme precaution to take with mia while she is on this med. She will have her blood drawn and urine tested every two weeks . Mia will also take an Antibiotic every weekend due to the med lowering her immune system.  If her body can handle the medication it will be about 6 months before we can tell if its actually working. Last night she went to a girls night at her school and had a great time ..it had been awhile since I had seen her that happy ... plus Daddy came home from Texas last night too !! Today was pretty rough on all of us really mia had pain most of the day on her head,eye and mouth.  She also started the med today which was rough on Rich and I because we are just nervous about the side affects and immune suppressing . I think we've both shed  a fair share of tears today . If Mia gets any kind of virus or anything it will be very scary and she will need immediate medical attention .We are both scared and hopefully ..... Thank you everyone for the texts, prayers and thoughts !

Even through all of this Mia has maintained straight A's in school and has kept her humor ...

The other morning Addy was laying on the couch Squealing and whining . Mia says "Addy if you were a baby bird ,your mama would have left you in the nest and never came back for you ." Lol ...

Mouth

Well I just updated yesterday but. ....
Mia cane out of dance class last night saying she was swallowing blood or was all over her teeth and tounge . The other day she said something about having a wiggly tooth ,so as I asked her to open so I could look I voted that was the cause of the blood.  No such luck her spots on the roof of her mouth were inflamed and bleeding . She fell asleep on our car ride home from dance and when I woke her up her mouth was hurting . This morning her mouth  looked about the same . She had pain in her eye as well and are breakfast holding her ice pack on her eye . She is on her way to school now . I will pick her up early for her pre op check this afternoon with her pediatrician. Then tonight if she feels up to it they are having a girls night rec night at her school !

Long days....

Where to start ....
In May Mia started complaining of pain around her right eye where the LM is located . She did end up having surgery and the Dr injected some of the area above her right eye that was swollen in hopes to alleviate some swelling and in return help with the pain. Sadly this did not help with either the swelling or the pain. 
As summer came and went Mia was having bad days and good days , her Dr at Milwaukee Children's hospital did not know what else to do to help Mia at this point .  
 Fall arrived and we still had no answers Mia started 5th grade at the Upper Elementary school, this was more nerve raking for us than her I think knowing she would be going to school with new kids . She had been with some kids since kindergarten but we feared the reactions from other kids who she may have never been around in grade school . Sadly kids can be cruel , so far there have only been a couple comments and they don't seem to bother Mia she actually laughed at one boy who said something about it to her .It wasn't far into the school year though when we started to get calls from the nurse , with Mia in pain and sometime even crying and would be going to the school to pick her up . Then they were days when she couldn't even make it to school because the pain was so severe. Most days Mia would wake up in pain ,mornings are hard because while she is laying at night they cysts can swell . 
 SIDE NOTE ...Our fear with Mia being in pain is that Mia has a very high pain tolerance and we have learned this as she has had 7 surgeries now and I think only taken pain medication at home with maybe one ...which was probably her coronal flap procedure( when they cut across her head from ear to ear). Its a very hard thing to watch your child suffer in pain day in and day out and have no answers for them nothing to do for them that can help . A few nights ago when  we were tucking Mia in she called Rich back as he was walking out and said daddy "can I have one more hug", as he put his arms around her she squeezed him tight and while crying said "daddy it hurts and I don't want to hurt all the time anymore"... of course this brought us all to tears. 
We had done some research trying to find somewhere to take Mia where we could hopefully get some more options to help her . Our first stop was the Anomalies clinic at UW childrens in Madison , Mia had been to UW once at around age 3 before they had this specialty clinic . We met with an interventional radiologist and neurosurgeon first. She went over Mias most current MRI results as apposed to a previous MRI . It did show that the area of her right orbit behind her eyeball has grown in comparison to the previous MRI. It also showed that it is growing in the bones of her skull ( as for this specific part there is ZERO treatment options at this time). Normally LM's grow with the person unless there is some sort of trauma or illness , except in the instance of girls hormones can cause the LM to grow . So as Mia goes through puberty it will grow more rapidly , pregnancy, ,menopause and she should never take birth control pills because of the hormones.    We next saw a neurologist who prescribed Mia a Medication (Nurotin)   she thought Mia may be haveing some neropathic pain and that this could help. We were very nervous about giving her this ..but we did try it . However it did not work out for Mia she became a zombie it was really bad. Next we saw an Child Oncologist who has tried a chemo med with some patients who have LM's and it has helped with pain and in some cases even shrinks the lesions . This med does not work for everyone and some peoples bodies cannot even handle the med.It takes about 6 months of being on the med to see if their are going to be any results .  The Dr felt that Mia would be a good candidate and a great time to start since she will be going through puberty. This med  has a lot of  negatives with it to unfortunately, it will weaken Mia's immune system and if she does get sick it will be a big deal ( this scares us ) . The Dr is great and taking many pro cations Mia had her blood drawn and did a urine test prior to the Dr prescribing the med, and she will have them every 2 weeks while she is on the med, to be sure her blood count remains normal and that there is no kidney or liver issues .Mia will also take an antibiotic every weekend to help with immunity . If she does become ill or run a fever she will need immediate treatment possibly even to go to the ER or admitted to hospital. 

We have also been in contact and had an appointment over the phone  with Nationwide Children's hospital in OHIO , there is an interventional radiologist there who does the injections to treat the Orbital LM's he is one of the only Dr's in the US who does this so he treats patients from all over . He believes that he could help with Mia . Mia will be having another MRI next week mainly focused on her orbit area to check if it has grown any more since the MRI she had back in May . It is important to not let these orbital LM's get to large as they can cause the eye ball to actually protrude from the socket ( I know ,,Mia hates to hear that part too) and vision loss. The procedure is a little risky and could also cause vision loss .


When I had children I thought when somethings wrong you go to the dr and they figure it out......
Don't take that wrong we are grateful for every Dr who has ever taken care of our baby , I just pray that in Mia's lifetime more can be learned about Lymphatic Malformations . 

Its been a long 7 months since this pain has started and we are just hoping for some relief for our Mia 

*Tomorrow she is going to her pediatrician to get a  pre surgical screening that can be sent to Ohio so that the surgery can be scheduled . 

*Next Wednesday she has an MRI at UW children's ( which she is doing awake ! )
 
*We also picked up the new med today ,so will be starting with that soon.