Harper is progressing so well...

Day by day Harper gets stronger and better at walking. It started with one step, then two, and now she can walk across the room all on her own! I just pray and hope it continues, hopefully by this summer she'll be running. :)

We have our next neurologist appointment in April and until then no other appointments or answers.

Truly what gets me through each day is waking up to sweet Harper and watching new things she learns everyday. (She has even learned to throw toddler tantrums- oh yay!) ;)

My friend Nicole sent me this quote today, and I think it's a great one so I wanted to share. "An arrow can only be shot by pulling it backwards. So when life is dragging you back with difficulties, it means that it's going to launch you to something great. So just focus and keep aiming:)"

Another one I read was this-
" The path of life will have many hurdles along the way. Jump over them, knock them down, go through them, but don't let them stop you."

So as you can see... I'm trying- TRYING being the key word to stay positive.

Thanks to all for your sweet words and prayers- I TRULY APPRECIATE EVERYTHING!

Xoxo,
Am

Geneticist Appointment

Today was Harper's geneticist appointment at Texas Children's Hospital. That might be one of the saddest places I have ever been! 21 floors of sick children, some wearing masks, some were hooked up to machines, and some that you could just tell that were born with abnormalities. :( Just absolutely breaks my heart!!!! We are so lucky that there are so many doctors and nurses out there to help us. And thank you to them! :)

Well so our appointment was at 8am. They got us in right away and the geneticist started asking questions from the start of my pregnancy to where Harper is at now. They asked about all of our concerns, her milestones, and did a thorough check with her clothes off of her body. She spent a whole hour of really trying to find out everything possible about Harper. While talking with her we found out that Harper's neurologist, Dr. Foster, is her husband!!! What a small world! After meeting with her she went and met with another geneticist, then the two of them came in the room. After he did a whole another round of checks and questions he informed us that he definitely thinks Harper has a genetic disorder. He said just from walking into the room and looking at her facial features. The shape of her eyes, her nose, her small chin, her eyebrows. So he ordered some blood work to figure out if its this certain syndrome, which he said he's 15% sure it's not. Then he's trying to get a hold of my insurance to do this in depth genetic testing that my insurance already denied. It cost $7,000.00, so we're hoping my insurance will say yes the second time around. We won't even know until April if they say yes, and if they do then the testing takes 6 months to come back. So basically the doctor said the same as the neurologist, which was to keep doing what we are doing. Continue her in her therapies, and continue working with her at home. And to keep focusing on the positives- that she continues to progress!!! After two hours of them spending their time with us we then had to go to the labs to get blood work taken. We should know in about three weeks the results of that blood work. I have to say these were Brian and I's favorite specialists. We didn't feel rushed and they were very thorough and informative with us.

I thank God every day that I know things can be worse. We are so lucky that we were able to get pregnant and that we get to hold and kiss our daughter to bed every night, and that we can play peek a boo with her and make her laugh. It's just so hard as parents to know that something is "wrong" with your child and to not know what it is. It can be AT LEAST a year until we have a diagnosis. Even though this whole process has been draining and stressful, I think all three of us are used to it now. Waiting rooms, telling doctors our concerns, and just the whole waiting process.

We are just continuing our prayers!

On a very positive note- Harper is walking all over the place.... Slowly, but walking! :)

Xoxo,
Amber

Onto 2013...

2012 was definitely an overwhelming and stressful year for the Reynolds family! It's hard to even go back and remember all of what happened, either because I blocked some events out or because so much has happened. First let me start this off by saying Brian and I are so blessed with our marriage, our sweet precious angel Harper, our jobs, etc, there is just so much we are blessed and thankful to God for.
This is where it's starts...
As Harper was supposed to be hitting her milestones, sitting, crawling, walking, talking etc. we noticed she was behind. After seeing three different pediatrician's before her 1st birthday we realized something was "wrong" with Harper. Our current pediatrician, Dr.Wright, suggested we see a neurologist, a geneticist, and do A LOT of blood work to see if we can find some answers as to why Harper is behind.
So we made many appointments to get some answers. The neurologist couldn't get us in for two months and the geneticist couldn't get us in for four months. It's crazy to think that there are that many people in the Houston area needing to see those specialists.

Shortly after our August appointment, it was Labor Day weekend and we were sitting on the upstairs couch in the game room resting and Harper was napping. Brian just went to check on Harper (not sure why, we have a video monitor and she wasn't sick.) But it was a God thing! When he went in to check on her she was seizing and throwing up in her crib. Ugh... It's so hard to write this and relive that day, but anyways Brian immediately picked her up and yelled "Amber, something's wrong with Harper, we have to go to the ER." I jumped up and saw her lifelessly hanging in Brian's arms with her eyes rolling behind her head. I said lets call 911, and Brian insisted he drive, he said he could get there faster. So we literally jumped into my car, me in the back holding and shaking Harper to life blowing in her face while Brian drove 110 mph down Lake Woodlands. The whole time we were shouting to God to not take our daughter and that everything be okay with her as I continued to hold her lifeless and eyes rolled behind her head. Brian pulled into the labor and delivery area (because the only place he was familiar with) and I jumped out of the car (no shoes and purse) and ran in yelling to the security officer that something was wrong with my daughter and I needed the ER. He immediately said to follow him and the we literally ran through the hospital to the ER. They immediately took her, and started hooking up her up to an IV. She started crying (which was a great sign.) Then they took her temp and it was 104.6, so she had a febrile seizure. We stayed for about 4 hours to make sure everything was okay and Harper played and ate popsicles and you would have never known something had been wrong. All I have to say is that I don't EVER wish that experience upon anybody!!!!

Now lets jump ahead a month or two. I enrolled Harper through ECI (early childhood intervention) and she now receives physical and speech therapy weekly. They also recommended that Harper see an orthotic doctor to get braces for her feet so she could be stronger. Since Harper has low muscle tone, this would help her use her legs and get stronger. We finally got her braces and they are adorable and she has made so many milestones with them on. We're not sure how long she'll have to wear them, it could be a year or a couple? But just today she took 5 steps on her own!

Then off to the neurologist we went. Dr. Foster was really nice and recommended and MRI, EEG, and A LOT of blood work to be done. All we knew was that she was developmentally delayed and had low muscle tone. Thank God all seven vials of blood work which tested for chromosomes, amino acids, metabolic, and several other things all came back normal. We had to return another day to do the EEG and MRI.

When we arrived at Memorial Hermann Children's it was 6:30am and we had to go in a room where they plugged 25 electrodes to Harper's head and she had to lay still for 20 minutes so they could read her brain waves. Now, trying to get a 15 month to lay still with all of these cords glued into her head was really hard, but Daddy came to the rescue by soothing her and laying with her until she fell asleep.

Then after that torture Harper had to be put to sleep for the MRI because its a 45 scan if the brain and you have to be perfectly still. It's always hard to sign the paperwork that says there is a possibility if the anesthesia doesn't work there is a possibility of death. Gosh, I couldn't stop crying signing the papers, watching them put her to sleep with gas, then saying good bye to her. All of these horrible things I don't wish for any parent and I sympathize for every parent that has to, and I feel bad for those parents that have it even worse than we do.

About two weeks later we heard from Dr. Foster that the EEG came back normal, woo hoo, Thank you God! Then he went onto say from the MRI that he could tell her brain in tremendously underdeveloped. And that's all he really could say. No other diagnosis, just that she'll always be behind. So what does that mean? I have 100 questions in my mind and I'm crying asking him, will she ever do this, will she ever do that? And he said instead of focusing on when will she do something or will she ever do it just to focus on the victories we do have with her and celebrate every milestone she does complete. Which is the best advice I could have!

So from here on out we have a geneticist appointment on January 17th, and a follow up appointment with the neurologist in April. All we can do is PRAY and HOPE!

As for me.... Well lets just say I've had my grieving period where I'll just break down and cry and ask God, why me? Why Harper? But I know that God chose Brian and I to give us this beautiful angel Harper because he knew we would be the best parents we could be and give her the best happiest life! So I just try to stay positive and work hard at being a good mom, a good wife, and I try to do everything possible to get Harper to progress. Which thank God, she progresses daily! I'll update with pics soon, but I wanted to let everyone know why I've been a little MIA. I have not been emotionally ready to really socialize, and I feel like I've been a bad friend to some and I'm sorry. But it's a new year and I'm being very positive that everything is going to be okay! :)

New beginnings.... :)

Xoxo for now, Am

Philippians 4:13
" I can do all things through Christ who strengthens me."

“You must take life the way it comes at you and make the best of it.”
― Yann Martel, Life of Pi