WOW! So much to catch up on!

What a treat to look back at the blog and see Harper's journey and my families memories. I'm so upset with myself for getting too busy to keep up with the blog for the last six years. These last 6 years so much has happened. Harper attended PPCD, Preschool Program for Children with Disabilities at the school I worked for. She was there for two years, and it was a horrible experience. Harper didn't progress much, had lots of tantrums, and the teacher wasn't very good with her. Brian and I decided that private school would be the best option for her. We packed up and moved out of our dream home in The Woodlands and moved to Houston for Harper to attend The Briarwood School. WE LOVED, LOVED, LOVED the school. Mrs. Brinkmeyer was her teacher there for 4 years and Harper progressed SOOOOOOOOOOO much and was so loved and did so well. Her teacher introduced Harper to a communication device that they worked on with her, and now Harper communicates iwth us via sign language, gestures, or her "voice," her communication device. In July of 2016 Harper had a follow up appointment with her geneticist. We had one every year. While we were there were told that they had found a diagnosis for Harper. At he time she was 1 out of 15, and it was called Okur Chung Neurodevelopmental Syndrome. We were shocked and in tears. The only downfall was it was such anew syndrome, they didn't and don't have a lot of answers of what the syndrome is like. Since then, we've gone to an OCNDS conference, made friends, and now I'm on the board for the foundation. In June of 2017 Brian and I moved into a townhome in the Memorial area. It was perfect for our family in a great area, totally updated and move in ready. Unfortunately, on our wedding anniversary our house was flodded by Hurricane Harvey and we lost everything we owned that was downstairs. It was 6 months of work, and we had used our entire savings to rebuild our house. It was a very tough time for our family, but we presvered and worked togetehr to get through it, and get back onto our house. In July of 2019, our family grew and our sweet Aspen joined our family. She is a full bred Siberian Husky and we just love her so so much! Then 2020 happened... the year of the pandemic! When the Coronovirus hit and everyone was at home, virtual learning, and wearing masks. We made the tough decision to take Harper out of private school, because it was so much money and to do online learning. We put her in the public school by us, Frostwood Elementary, and it has been AMAZING!

What could it be?

On August 15th, Harper had her second MRI. My little girl is such a trooper and my husband is my rock as we go through this journey together. For this MRI we (or should I say Brian) had to hold her while they put in her IV. Sweet girl was terrified at to what was going on. Then Brian carried her as I followed to the actual room where she would be getting the MRI scan. They then put the anasthesthia in the IV and Brian and I sat there as we watched Harper's eyes rollback into her head as she drifted to her out of concious state. It was extremely sad to watch! They made us then leave and wait in the waiting room for about 45 minutes, until they called us to go help wake her up. Within 10 minutes she was awake and we were on our way home. 10 days later we went back to the neurologist to find out the results. From the doctor he said that her brain is "significantly abnormal." The white squiggly lines on the outside of the brain were more straight (they should be squiggly.) and the cerebellum (the internet part of her brain) was very thin when it should be think. He said that the reason why is that Harper has a chromosome abnormality or irregularity. He said it happens in 2%-4% of all my first time pregnancies. It is not genetic because genetics would be that Brian or myself passed it to her.

We told him that we had an appointment with a new geneticist (for a second opinion per her pediatrician) and he said that if they could not find a more accurate diagnosis then to close the door. He said we know it's a chromosome 

Harper is almost THREE!!!

I can't believe in one month my baby girl will be three!!!! She has grown so much! Her long beautiful curly hair, her long lean legs, and that gorgeous infectious smile! Since Harper will soon be three she will unfortunately lose all of her ECI services, PT, OT, speech, and cognitive therapy. But..... Fortunately Harper will be getting to come to school with me everyday and be in the PPCD (preschool program for children with disabilities.) She will have goals and get therapy once a week for PT, OT, and speech! I'm so excited for her to come to school with me and be a Houser hawk! PPCD is a half day program, so after her class ends at 11, she will go back to First Kids Academy and eat lunch, nap, then play until mommy gets off of work. We also just got into a private therapy one mile from my house! We have been on a waiting list for a while and I was driving to Conroe every week, so this will be much more convienent! 

Another update is Harper had her 24 video EEG at Memorial Hermann on June 13. We will know 4-6 weeks from that date if she is having seizures, and if so get on medication for it. It was a very long 23 hours, but it will all be worth it once we find out answers whether she is or is not having seizures.

More to come soon! Have a relaxing, safe, and blessed summer! 

"Unknown" Syndrome

So many Doctor's appointments this summer, but it's been great! We've been finding out more answers and we are starting to realize what our future will be like with our little angel. So on June 13th Harper had her 23 hour video EEG to check to see if she was having seizures. After 5 weeks if patiently waiting we got the phone call last week that Harper's results were in and everything came back normal! PRAISE GOD! :)

Then this week we had a neurologist appointment with a new neurologist (my pediatrician recommended it.) and we absolutely LOVED him! He was very personable, friendly, played with Harper, had amazing bedside manner, and he was VERY knowledgable. After playing with her, and hearing Harper's journey thus far, he basically had the same answer we have heard before... That it is genetics!!!! So even though our results came back normal, they are discovering new genetic syndromes EVERYDAY! So he would like for us to get another MRI and more genetic testing within the year. I of course asked him (and I've asked EVERY doctor this) if it was anything I did during my pregnancy, and he had the same answer every doctor has given me before... ABSOLUTELY NOT! I think it's so much easier for me to blame myself sometimes than to know this was God's plan. She is God's creation exactly how he wanted her to be! Fearfully and wonderfully made. His works are wonderful, I know that full well. 

The next appointment we had was with a new orthopedic doctor (pediatrician also recommended) to see if Harper still needed to wear her braces on her feet for her low muscle tone and for her pronated ankles. This doctor was phenomenal!!! He was like an orthopedic doctor, neurologist, geneticist, marraige counselor, and therapist all in one!! He isn't really, but totally could have been! He was very knowledgeable and as soon as he met our sweet Harper he right away asked "What's her diagnosis? Genetics?" And I was like well no, but yes. No, as in everything has come back normal, but every doctor has said genetics. and then he said, "oh, yes, I call that the unknown syndrome." He said he has several patients who clearly have something wrong, but there is no diagnosis. And I said I love that, because it's so frustrating to not have a name, so I'm sticking with the unknown syndrome until we find out more. He also told us that he feels like Harper no longer needs to wear her braces Bc her quads are now very strong, but her feet, ankles, and calves are weak and how can we strengthen them if they are in a brace? He said she needs to be barefoot and strengthen her muscles as much as possible. So that was good news, but part of my motherly intuition feels like she still needs them. She has a follow up appointment with her orthopedic doctor in 6 months so we will see how she's doing and what to do from there. He then randomly started giving Brian and I marraige advice. Just saying that 80% of marriages with a child of special needs ends in divorce. He said those 20% who remain married are the strongest couples he's ever met. He said the key to a successful marraige is to understand that your partner has their own way (not that it's a bad way) of working with your child and to not get onto each other for how we work with our child. He also said to set the bar high for your child, but not too high where your child can not be successful from it. He also suggested putting Harper in swim lessons (we are currently on the waiting list,) equine therapy, and other things to have Harper moving and thinking and for both Brian and I to be in agreeance with whatever we do put Harper in, which luckily we are. I have such a supportive, helpful, sweet husband who loves that I try to put Harper in several things and appreciates that I take time to do that while he is working. 

Next step from here is her 3 year check up! I can't not believe our angel is three!!

We had the best birthday party for her. It was an Under the Sea theme and turned out perfect! There was swimming, a fish piñata, pizza, cupcakes, and an assortment of candy that correlated to

Under the Sea! We feel so blessed to be celebrating three years if life!!! 

Can't wait to see what her third year has in store for her. Starting in PPCD, continuing private therapy, and starting swim lessons! I can't wait to watch her blossom!! 

A very late update.....

So it's been a long time since I have updated last, but I didn't really feel like I had much to update on until now. Harper has been great! Progressing and learning new things every day! One of her newest accomplishments that Brian and I are so proud of is that she is doing really well with signing to us and communicating to us through sign. She only does the basics, like milk, please, more, all done.... but it is huge that she is initiating it. The other day we were eating dinner and Harper walked over to the fridge and did the sign for milk, then please. And I was like.."AHHHHHHHHH! Harper you want milk, please? Good girl!" She had never done that before! She is also doing so well mimicking us and trying to repeat sounds back to us that we say to her. Her favorite sound is "mama!" Harper is still doing her therapies through ECI, and they have been great! She has speech, occupational therapy, and cognitive therapy once a week, and physical therapy twice a week. I also take her to private speech and occupational therapy once a week. I truly think all of the therapy helps. We also still have Harper on the organic, gluten free, dairy free, soy free diet and we really feel like it has made such an impact on her behavior. Last week I had the amazing opportunity to go to New Danville, a self sustaining, master planned, integrated community where adults with intellectual and developmental disabilities can Live, Learn, Work and Grow emotionally, socially, and spiritually with their non-disabled peers. The charity event is called Tea on the Lawn and it helps raise money for the New Danville community. I would definitely check out the website and contribute to the charity. http://newdanville.org/ The following day after the tea luncheon Brian and I had the privilege to go to the Gateway Academy Gala. The Gateway Academy serves students with social and academic challenges through innovative approaches to learning, physical fitness, and social awareness. The graduates encounter a changing world with self advocacy, opening a path to personal significance in college, career, and community. We hope that someday Harper will get to attend the Joy School, which is the K-6th grade private school similar to the Gateway Academy but for younger kids. Then go from there go to the Gateway Academy. While we were at the Gala, my friend had mentioned to me how blessed we are with Harper. Which I know and thank God every day for our sweet little angel. But she said the fact that Harper can walk and smile, we should be very blessed because there are so many other kids and families out there with way worse situations than ours. It really hit home and really really really made me super thankful and blessed. So every time I start to feel down, or get upset that Harper CAN'T do something, I just remind myself that I'm so blessed for what she CAN do! Sooooooooooooo.......Yesterday was Harper's 6 month review at her Neurologist and we were excited to go and hopefully hear some answers. After several questions about what Harper is doing developmentally and because of her febrile seizure she had after she turned one he wants Harper to do a 23 hour video EEG. They will call me to set up an appointment and Harper and only one adult, probably me, will go into a small room and they will have different electrodes on Harper's brain and they will watch and monitor her. She will still do daily activities like, eat, play, sleep, but they are watching for mini seizures that we might not be noticing. If she is having mini seizures there is medicine along side with intensive speech therapy that could help her speech. The doctor thinks that she could be having seizures because Harper is great receptively, she listens and follows instructions and understands what you are saying, but expressively she can not do. So he thinks she could possibly be seizing and that is making a barrier between the receptor and expressive area in her brain. So please prayers for Harper that we will find out what is causing her to be delayed. We also asked about Autism again, and he said no. He said that he can tell right when he walked in the room that she doesn't have autism just by her social interaction. He said just because Harper is nonverbal and because she has sensory processing disorder, does not mean she is autistic. We also asked again, why does she have the low muscle tone, like why does she drool, need to wear braces, etc, and he said that is because of genetics. So even though her genetic results came back normal, he still thinks something genetically went wrong, (or right, like I would like to say it.)He then continued to say he can tell it is genetics because "she is odd looking." And I said "she is NOT odd looking she is beautiful!" Then he said, "oh she is beautiful, but I can just tell by the way she looks, like her nose, that it is genetics." SO WHATEVER THAT MEANS!!!!! But he did say that it is still too early to do another MRI, maybe in another year, to see how her underdeveloped brain is looking, and then maybe another 2-3 years to do the genetic testing again. We are getting closer to some answers, but no answers yet. We just hope and pray everyday that she continues to progress. We wouldn't change the situation for the world. She is our gift, our angel, and God has given us a blessing! We will keep you updated once she has her 23 hour video EEG and she has a genetic appointment in July. Continual prayers please!

New Year... New Beginnings!

Happy 2014! It's been a while since I've updated my blog. I guess a lot of it is because I feel like I don't have a lot to update on for Harper. But here is the latest.... Our sweet little angel is so happy and loves life and loves the outdoors. She is still progressing, which is a blessing in itself! Learning new things like kicking a ball, blowing, climbing into her car seat, listening and following directions better, and babbling SOOOOOOOOOO much more! We have so much to be thankful for that we are seeing this progress. Harper is continuing to get speech and OT therapy every Monday, communication/ cognitive therapy every Tuesday, and physical therapy every Wednesday. She is also taking "gymnastics" every Wednesday and Saturday, so needless to say she is a busy girl and I am a busy momma! I truly do believe that all of these interventions help! I'm still learning every day different skills to help teach my daughter, and I think this will be a lifetime of learning. I have a little story from the Christmas Eve service, at Fellowship of The Woodlands that really touched my heart and I would like to share. The whole service was beautiful, the music, the message (finding the "light",) and especially the last message. At the end of the Christmas Eve service they showed a video of a husband and wife sharing their story about their beautiful daughter, Jamie Faith. Jamie Faith was a precious, smiling, sweet little girl, but at 4 months they noticed she was behind on some of her milestones. So their pediatrician recommended them to see a neurologist and a geneticist. The mom of course blamed herself and wondered what she did during her pregnancy to have "caused" this. But it was then when she was in Jamie Faith's nursery and there on the wall was picture that said.. Psalm 139:14 (NIV) 14 I praise you because I am fearfully and wonderfully made; your works are wonderful, I know that full well. And the mom knew right then and there is wasn't her fault and Jamie was made purposefully from God for her and His works are wonderful! That message really hit home to me! Well they found out that Jamie Faith's brain was underdeveloped. When Jamie Faith was "supposed" to be walking, she wasn't and it was near Christmas time so the family vowed to not take down their Christmas tree until Jamie Faith learned to walk. Well around that same time Jamie Faith got sick and had to go to the hospital and her brain was shutting down. The doctors told the family that they didn't have long so the mom and family and friends created a bucket list for Jamie Faith. Some things on her bucket list was to take a picture in bluebonnets, have her nails painted, put her feet in the sand, have a tea party, etc. So they showed pictures up on the big screen at church of the family and friends doing all of these things with Jamie Faith in the hospital bed. *** I WAS A MESS*** Shortly after, sweet Jamie Faith passed away and they had a funeral for her and had the Chinese lanterns go up into the sky for Jamie Faith to find the light in God. As you can probably imagine I was a a crying MESS! Every time I leave Church I feel as if Pastor Kerry is talking to ME, and after that service my family said "Amber, that message was truly to YOU!" I sympathize with Jamie Faith's family, but I can't even imagine what they have been through to see their baby girl pass away. I thank God every day for my little blessing running around, being silly, and babbling with stories! To see this video, http://m.youtube.com/watch?v=cc2mNvKl52s

 Onto ANOTHER note.... we had a very scary experience happen to us this weekend. Brian, Harper, my mother-in-law, and I went to eat in the Heights at Ruggles on The Green. Brian had gone to get water to put in our drinks and my mother-in-law and I were chatting. Harper was standing next to me in the booth and started slapping my face. I told her to stop and preceded to talk to my mother-in-law. Harper started to slap me again so I turned to look at her and she was CHOKING!!!!!!!!!!!!!! I literally freaked out and jumped up and yelled in the restaurant "My daughter is choking!" I thought it would be like out of a movie and someone would jump up and say "I'm a doctor" and run over to us and save the day, but I was wrong... It was NOT! I started by trying to clear her mouth, nothing was in there, then a waiter ran over and tried to do the heimlich, which I knew was wrong, (you don't do an adult like heimlich with a toddler.) By that time Brian had run over, Harper's lips were turning blue, he turned her over and started hitting her back, he'd clear her throat, then hit her back again. In the meanwhile EVERYONE was standing up watching us, a man was calling 911, and no one was helping. Finally, my super hero husband saved the day and a cube of cantelope came out of her mouth and she started crying. Right away, I picked her up and ran outside with her to hold her and just cry together. I felt like such a horrible mom for ignoring her when she was trying to tell me she was choking. Ugh... breaks my heart just thinking about it all over again. MORAL of the story is to BE CERTIFIED AND AWARE OF WHAT TO DO IN THAT SITUATION. and to be CALM! I am certified, but because I was in shock and in a panic, my mind literally went blank and I didn't know what to do. I can't say this enough, but we are so BLESSED that everything turned out to be okay. SO BLESSED!!!!! Please check out the American Red Cross and see where you can be certified. Please continue to keep us in your thoughts and prayers that Harper continues to progress and we find out a diagnosis for her! Much Love from The Reynolds family! XOXO

Updates.... Staying Positive!

I love Fall, it is an absolutely beautiful time of year! It's always so exciting when the weather cools down! Harper is definitely a nature girl and LOVES the outdoors. So we have been spending a lot of our time at the park, wagon rides, and in the backyard. A little bit of an update on Harper is that we have started all of the "medicine and vitamins" for Harper. I personally don't think I've seen a change in her behavior, but everything helps! We are continuing to give her B12 shots every three days and I'm hoping to really see a difference or a change soon. Her ECI, Early Child Intervention, came over on Friday to do her annual review, because a year ago in October we were fortunate to have those services started for Harper. So basically after 3 hours of evaluating Harper and asking me questions of what she can and can not do, they made an assessment of her progress. For example, Does she know her shapes? no Can she dress her self? no Can she throw a ball 5 feet? no and on and on and on. They compared to her peers and they tried to see if she could complete tasks at her level. After the evaluation they said she is GLOBALLY delayed, which means delayed in every area. Then they said her cognition is at the level of a 12 month old, her self help/adaptive is at a level of an 8.5 month old, her communication is at a level of a 10.5 month old, her gross motor is at a level of a 17 month old, her fine motor is at a level of a 20 month old, and her social emotional is at a level of a 12 month old. They have upped her physical therapy from 2x a month to 4x a month and they have upped her cognition/communication therapy from 3x a month to 4x a month. They said they don't see autism, but she definitely has a "syndrome". Which her geneticist also said, but it is all unknown for now, to which is why Brian and I are highly considering not have another child. Since there is a 1 in 4 chance of having another developmentally delayed child. I truly feel that Harper is our angel and we are soooooooo blessed to have her. She makes us smile everyday and I couldn't imagine our life being any different. Harper has made Brian and I better people and we are so grateful for the life God has chosen for us. Some of my favorite quotes: "There is Always, Always, Always something to be thankful for." "Train your mind to see the good in everything." "it is in Christ we find out who we are and what we are living for" Ephesians 1:11 "Think Positive and Be Positive and positive things will happen."