MRI Day.

Today, we headed into Boston for Mia's MRI. We arrived early and she went in with the doctors around 10:45 a.m. Only one parent could go in with her, so Jay was the designated parent - totally prepared for the task of getting Mia to cooperate. I knew Jay would be the one to go in with her - they have become a team over the last year. Daddy goes in with her for all of her not-so-fun appointments - shots, having blood drawn, ultrasounds, xrays, etc. He has a way with her that calms her down, allowing the doctors to do their jobs.

Everything went well. She fought them in the beginning, but was soon asleep and then Jay returned with a very tear-soaked, little lamb that she had been holding - the one she also falls asleep with at night. So, Jay, "Baa," and I headed over to get a cup of coffee (my preferred "breakfast" these days) and a breakfast sandwich for Jay, since he is not a coffee drinker. Baa had the fruit cup. :)

Then we went back to the waiting room and waited and waited and waited some more. Finally, around 1:15 p.m. they wheeled Mia out and met us in the hall. It is so strange to see your child asleep like that - it is a very disturbing and unpleasant feeling. We followed the doctors as they pushed her bed up to the recovery floor and there we waited for an hour for her to wake up. When she finally stirred, she immediately wanted to take her oxygen mask off and rip out her i.v., but we got her to calm down and the nurse let her sit in my lap while she guzzled a cup of apple juice and watched "Dora the Explorer," one of our least favorite cartoons, but Mia didn't seem to mind. The nurses liked her so much that they gave her a Dora doll - yippee! :)

It was a very successful day. She did an amazing job (as always)! We should get the results back in the next couple of days and we are believing for a GOOD REPORT!

Now that this is past us, I can finally focus on Christmas. We are really looking forward to the week of Christmas and for a short break from appointments and doctors visits. She does have one PT session next week, but that is it. It will be nice for the four of us to be home and enjoying the holidays together - in peace and quiet! I am REALLY looking forward to it!

Please pray!

Mia is scheduled to have an MRI tomorrow morning on her right ankle and foot. The appointment is at 10:30 a.m., but she has to be there at 9:30 a.m. to be prepped for the procedure. Also, she can not have anything to eat after midnight tonight and can have clear liquids up until 7:30 a.m. tomorrow morning. Well, Mia usually doesn't wake up until 8:30 a.m. so I am hoping that we can get her dressed and in the car without any hassles. We can be in the room with her while they are prepping her, but we have to leave while the procedure is being done. She will be in there for at least an hour....and then in recovery afterwards.

Please pray for complete peace for Mia (and for us!) tomorrow. We are believing for an excellent report!!




Mia enjoying her first time sledding
12.13.07

Accomplishments!

Mia does not do tunnels! You know, the long, fun tunnels that kids love to climb in and out of. Yeah, those ones! She has never liked them. Her PT and I think it is because she is afraid to crawl on her knees for fear that it might hurt. It is her way of protecting herself.

Well, today, after swinging on the swing for a long time, pumping her legs back and forth, and then running up and down the matted ramps 50 million times without any hesitations, Mia turns to Mary and says, "Tunnel? Tunnel?" Mary and I looked at each other completely shocked. Several weeks ago, we tried to get Mia to go through the tunnel. When we got it out she looked interested and tried to position herself in front of the entrance to go inside, but then gave up and told us, "No! No! NO!!" We figured it was because she was protecting her joints. So, we were quite shocked when she asked if Mary would get it out today.

So, we set it up and put a ton of balls inside and Mia immediately got down on her hands and knees and crawled back and forth, passing balls to both Mary and myself, and laughing hysterically the entire time! We just stared with our mouths open. Mary said several times today how great Mia looks - from her squatting to her running - but this topped everything! Today was a VERY good session and we are very proud of her recent accomplishment!

This week: Mia has an MRI scheduled this Wednesday to get a better look at her right ankle. We are believing God for an excellent report and that her rheumatologist will be completely amazed at how well Mia is doing!

Vaccinations...

Well, here is the latest update! Yesterday at PT, Mia's therapist said that if she continues with the way she has been going for several consecutive weeks (with no flare-ups) that we will be able to change her PT from twice a week to once a week! She has been very impressed with the way Mia is progressing. Last Thursday she was not limping during her session and she did all great on all of her exercises. She really enjoys playing with the putty and the beans and doing the balance beam. She is really doing great with the stretches and the massage therapy sessions, too. She sits so still as the therapist works on her joints. I think she is starting to understand that they are there to help her. She still has some inflammation on her knee, here elbow, and her ankle, but overall we have seen HUGE improvements from the diet change, the PT and OT, the meds, and PRAYER!

Today was Mia's two-year check-up at the doctor's. We spoke with him about opting out for the flu shot and he agreed. Also, we asked him what vaccinations we could wait on for her given the current condition of her immune system and he said that she isn't due for any vaccinations until she is ready for kindergarten. PHEW! I was concerned the vaccinations might cause a flare-up and I want Mia to have a good week because it is her second birthday on Saturday! I really appreciate Mia's pediatrician. Every time I leave his office he makes me feel better as a parent and he is always very supportive of what we are doing with Mia. He told us that if Mia was his child he would be doing the exact same thing right now. He wants us to continue with her diet change for at least six months and then we can start adding things back into her diet to see what is causing the inflammation and pain. He said there is no harm in what we are doing and that everyone could benefit from being on a diet like what Mia is on. While he was happy with what we are doing with Mia's diet, he also wants her to start seeing a pediatric nutritionist after the new year to see if there is anything else that would be beneficial for her right now.

Brace update! Mia has been doing GREAT with the leg brace at night. The first two nights she cried before she went to bed about wearing it, but she slept through the night with it on just fine. Now, we can put it on her and she isn't bothered by it one bit! She never wakes up in the middle of the night from it and it really seems to be helping her. I have noticed that her knee is quite hot in the morning and there is a bit more fluid around the knee, but that is probably because it has been straight all night long and her body is adjusting to that.

I am VERY proud of my Mia! Every day she continues to amaze me! With all the doctor's appointments and therapy sessions, she never has a fit and handles everything just fine! God blessed Mia with the bubbly personality that she has - she is always so smiley and so friendly at her appointments. Her latest thing is to "chat it up" with the elderly people in the waiting room at her PT sessions, which they just love! Jay and I are truly blessed to be her parents!

Another good report!

Mia received ANOTHER good report on Thursday while at PT. Her Thursday therapist, Kathy, measured Mia's leg and arm again and said her arm is straight and her leg is almost straight. Now we just need that swelling to go down in several of her joints and she will be they way God created her to be...a normal, healthy little girl without any complications or hindrances in her body. She is definitely a MUCH happier little girl!

So much has changed in our lives over the past two months. Sure, being parents of two isn't an easy feat, but it is nothing compared to watching your daughter struggle over the last several months and feeling so completely helpless. I was just saying to my husband tonight, as we look through our October pictures of Mia the week before she was diagnosed, how we had no clue what we were in for. Even the day of her appointment...I was so frazzled just getting her into Boston for the appointment that I think I sat there frozen for what seemed like an eternity as the doctor told us what was going on with Mia's body and how her immune system is attacking itself and causing great pain for Mia. That had to be one of the saddest days of my life. No one likes to hear bad news, but especially bad news about your child. It was (and still is) a very hard thing to get through. There are days where I feel strong and days where I feel totally winded, like a huge wave keeps knocking me over and over and over.

Tonight at dinner, as I made yet another gluten-free, dairy-free, eggless meal for my daughter, my husband and I talked about how much it just stinks that everything happened to Mia right around the age where she would have started enjoying a ton of fun, toddler-type meals (mac and cheese, spaghetti, birthday cake, Christmas cookies, etc.). And while a small wave started to build up to come crashing over me, I quickly repressed it by saying, "But she WILL get to enjoy those things. Maybe not right now, but someday she will!" I can't WAIT for the day when I can take Mia to McDonald's for a happy meal! :)

Things to pray for: Mia has an MRI scheduled for 12/19 at NEMC for her ankle. Please pray for her (and us) that day that everything goes smoothly, that the doctors have wisdom, and for peace for Mia as she will be put to sleep for the procedure.

Thank you to all of our friends and family who have emailed or called. We greatly appreciate the words of encouragement, support and prayers. There is nothing like family and we love you all very much!

Healthy rewards!

It is Thursday (*sigh*). We have almost made it through another week! We took Mia back to NEMC to get her brace and last night was her first time wearing it. We spent about a half-an-hour before bed getting her "warmed up" to the idea of this new contraption that she will be wearing on her leg every night while she sleeps. I realized she was going to need a little bit more than just verbal persuasion. So, I got the idea to get out a marker and color on the brace and make it look fun and pretty for her...and less scary. So, we drew a picture of a sun, a flower, a butterfly, hearts, AND her favorite cartoon characters, Charlie and Lola (www.charlieandlola.com).




She calmed down a bit, but still wasn't totally convinced. So, my husband said the phrase that I am sure all parents say at some point when they are desperate - "If you wear the brace all night long and don't take it off, Daddy will get you a special treat!" After that, there were some tears still and at one point she said to me, "Momma, take it off!" However, she finally calmed down and went right to sleep and did not take the brace off. I had to go in this morning at 8:45 a.m to wake her up and was very pleased to see that she had slept through the entire night and did not take the brace off once. The brace is velcro, but I don't think she knows how easy it is to get it off. Hopefully, she won't ever find out!

So, to make the day a little bit more pleasant for her, I decided to do a trial run of her cupcakes that I will be making next week for her birthday. Originally, I had planned to just go off of her diet for one day and let her have a regular cupcake on her birthday...that was until she had a flare-up a week and a half ago. She woke up in the morning and could not walk. We believe it was a result of something she ate the day before that caused her joints to stiffen, creating incredible pain which prevented her from walking. So, after that scary incident, I decided to play it safe and stick to her gluten-free, dairy-free, egg-free diet by making "special cupcakes" for her birthday. A friend of mine recommended the Cherrybrook Kitchen Chocolate Cake Mix. So, I tried it yesterday and it was fabulous! Even my husband ate an entire cupcake! For the cake mix I substituted the vegetable oil for coconut oil and I used gluten-free vanilla extract instead of regular vanilla extract. For frosting, I used the Cherrybrook Kitchen Vanilla Frosting Mix - it was very good! However, I DO NOT recommend trying to make cream cheese frosting by substituting Toffutti's Better Than Cream Cheese for regular cream cheese - it tasted and looked like Elmer's Glue! BLEH!

Mia LOVED her cupcake! It was a special treat for her and something I can take to other birthday parties as a healthy and safe alternative to regular cupcakes.

A Good Report!

Mia and I just returned from her Monday morning physical therapy appointment. Her PT, Mary, was quite impressed with Mia's progress. When Mia began PT back in October her left knee was bent at -20 degrees (a normal knee is at 0 degrees). In November, they measured her again and she was at -10 degrees. Today she is at -5 degrees! Praise God! Her PT was VERY excited and told us to continue doing what we have been doing (PRAYER, diet change, and NSAIDs*) with Mia because it is obviously helping.

Also, her right elbow was bent at -8 degrees. When she measured Mia today she said she was "practically straight." This is HUGE!

While we are thrilled and encouraged about these good reports, Mia still needs prayer for her right ankle. It was very swollen today and you could actually see the ball of fluid sitting on top of her ankle. Mary did some massage therapy on her ankle to work out the pocket of fluid as best as she could. She also told us to keep an eye on Mia's hips. She noticed something isn't right when Mia walks and that her gait is off. However, we know Mia is healed and just as her knee and elbow are straightening out, we know that the rest of her joints will as well. Mia's joints and tissues and IMMUNE SYSTEM will function the way God created them to with NO MALFUNCTIONS or DISEASE!

I am a very proud mommy. My little girl is handling everything so well....even the teaspoon of cod liver oil that she drinks every morning. She is healed, healthy and whole in Jesus' name. :)

*nonsteroidal anti-inflammatory drugs

A few bumps along the way...

So, this morning could have started out a bit better than it did. After getting both babies ready for church and out the door, we finally arrived at the House of the Lord. I was soooo in need of some time with God today. So, I rushed around and got Mia in her class and then brought JJ downstairs with me to the sanctuary to hang out until he started to get fussy. Just as I started to spill my heart out to the Lord, my pager from the nursery went off. It was Mia...there were "issues" in the nursery and "fires" to put out. After everything settled down, I took JJ (who was now fast asleep) back downstairs to the sanctuary. I had been in the middle of a very deep convo with God and I wanted to continue where I had left off. I was in service for five minutes when my pager for the nursery made a loud beeping noise, which usually means you have a faulty pager. So, I trekked back up to the nursery with JJ to exchange my pager. That's when it happened. Just as I was leaving, Mia tripped and fell and wacked her head on a wooden rocking chair. Then the purple and blue egg-shaped bump began to appear. I knew at that point there was nothing I could do but remove Mia from the nursery and take her back downstairs with me. So, my time with God was cut short today. There was no point in me staying and hanging out downstairs with two babies who both needed my attention at the same time. So, I loaded the kids back into the car and headed home. Perhaps next Sunday I shall talk to God from home. :)

Aside from a very crazy morning, Mia had a good day today. Which is good because she has a very busy week ahead of her. She has PT on Monday, OT on Tuesday, Wednesday we are back at NEMC to get her knee fitted for the brace she will need to wear at night, and more PT on Thursday. Needless to say, I am looking forward to Friday and hope it gets here quickly! :)