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."

Latest from Harper's Biomedical/Metabolic Doctor Appointment

Harper had her follow up appointment on September 5th with her doctor who did all of her blood work, stool samples, and urine samples back in July. From all of these tests we got results of Harper's allergies, what vitamains she is deficient in, etc. We found out that Harper is in HIGH need of Zinc, Magnesium, D3, and Iron. So every day, I now have to add those to her intake. On top of that we have to start giving her B12 shots every three days! Eek, I'm so scared, because WE actually have to give her the shots. BUT... I'm super excited because her doctor said that 95% of her patients progress and do really well after getting the shots. She said that she even has some moms that call in and say their child started talking the very next day after getting the shots! PRAYERS! In addition to all of these vitamins.... She is going to start taking L Carentine to help with her low muscle tone and some juice plus capsules to give her antioxidants. The big kicker is that is also hopefully going to help her is a antibiotic that is going to flush out all of the yeast build up in her gut from before she was on this gluten free diet. They said the yeast fogs up the brain, so hopefully after this 10 day cleanse of her system, she will also be more focused and progressing even more. After the 10 days cleanse, then we give her a 30 day probiotic of "good bacteria." We also saw in the reults that Harper is allergic to dust, and her system does not react well to Gluten, Lactose, Soy, or Peanuts. So I'm so glad we started her on this diet three months ago. :) So there are A LOT of steps we have to take, but I'm excited to try anything to see what will help our sweet Harper. She started at her new school two weeks ago, First Baptist Kids. I absolutely LOVE the school and her teachers. They said she is doing really well. She even learned how to drink out of a big girl cup there. Yay, go Harper! As for my job, teaching PE, I LOVE IT!!!! I seriously have a dream job! Wokring with little kiddos and helping them become physically fit, I couldn't ask for a more fun job! So all is good right now in the Reynolds fam, just continual prayers that Harper will progress and we really see some results with all that we are about to do!

Some healthy recipes for toddlers and families:

My friend Julie asked if I could share some recipes that Harper enjoys. I try to make everything for the whole family to enjoy. Below are some of Harper's favorites! And I added a picture of Harper eating her gluten free, lactose free, soy free chocolate almond milk ice cream from TCBY.

Eating watermelon...

Eating gluten free spaghetti with gluten free marinara

Of course like I have stated before every morning Harper has her smoothie. She loves her smoothie and loves pressing the button in the blender to get her smoothie started. The smoothie recipe that I make is below:

Harpers Smoothie

4 oz of organic no sugar added apple juice

2 tablespoons of unsweetened apple sauce

1 Tbl of liquid vitamin

1 tsp of cod liver oil

1 carrot

1 handful of spinach

1 small handful of kale

1 coconut yogurt

1/4 tsp of powdered multi vitamin 

1 DHA omega 3 

1 banana

1 cup of organic fresh or frozen fruit

Blend together and enjoy! (Of course you could make this without the vitamins and it would still be just as yummy!)

Dolma-

(Remember I do all organic)

3/4 cup Brown rice

Tomato sauce 

1 lb of Grass fed hamburger meat

Your preference of Onion, Eggplant, Zucchini, Bell Paper, grape leave etc. (hollow out the center)

 

Cook the rice and in a seperate pan cook the beef, spices (all spice and pepper), salt, lemon juice, olive oil and garlic, chopped onion and few chopped zucchini and half can of tomato sauce.

When the meat and rice are finished cooking, combine, then stuff inside the hollow vegetable.

When completing the stuffing of the ingredients, place in a tall pot, then add the other half of the tomato sauce and half of a cup of water and place on medium high heat.

More to come soon...

We have been BUSY, BUSY, BUSY!!!!

Its so nice to be a teacher and have the summers off. Not because I get to relax, but because I can get so much accomplished! We went on some vacations... Harper and I went to Charleston, South Carolina to visit Nicole, Morgan, and the newest Codell addition, Callaway. She is absolutely precious! Then Brian was able to go to NYC to see his sister, Sarah, and help her with her art show. Then at the end of July, Brian and I went to Honolulu to celebrate our 5 year wedding anniversary (even though it's August 30th, we had to plan a trip when I wasn't in school.) We had a blast and created so many memories and we are so blessed and grateful that we were able to take these trips. Harper also celebrated her 2nd birthday party. It was an anchors away theme. An Anchor is the symbol for HOPE and we have definitely had a lot of HOPE this year. It just seemed so fitting. Because we feel like we have so much to be grateful for, we asked all of our guests to bring in gifts for patients to Texas Children's hospital, instead of Harper. We received a lot of great things and it was a great feeling dropping them off at Texas Children's the following Monday after her birthday party. I also used A LOT of my time this summer taking Harper to all of her follow up doctor appointments and working with her behavioral/occupational therapist and her physical therapist. Our medical journey this summer started by me taking Harper to Dr. Jody Caldwell, she is a biomedical doctor who looks at Harper's blood, urine, and stool (which I had to collect the urine and stool sample and send it in.) to see if she is deficient or lacking in anything in any way. She wanted me to continue Harper on the gluten free/ casein free diet, which has been great! Harper is a fantastic eater now and loves her proteins, veggies, and fruits. No more processed foods, all healthy! :) She wanted Harper to start taking cod liver oil, which is great for the brain, continue her DHA omegas, and additional multivitamin to the other one she is already taking. We should know in a couple of weeks her results to all of her tests. Then we had her geneticist appointment. So remember a while back I said we received the genetic results and they came back normal. Well..... they did, but there were 4 genes that came up as red flags, so our Doctor had us do some more blood and urine samples (I know, poor Harper is always getting pricked and prodded.) We should know in a couple of weeks the results of those tests. It truly is such a waiting game... All we can do is pray and stay positive. The genetic doctor did say though that he thinks if Brian and I were to consider to have another child that we have a 1 in 4 chance that our next baby could be like Harper. He also did say that he did not think Harper was autistic, but to ask the neurologist his thoughts. So a about a week later we had our next follow up appointment with Harper's neurologist. After waiting 2 1/2 hours we went and asked how much longer and they told us ANOTHER hour and a half. We left, because a toddler can only wait so long, and we rescheduled with a different neurologist for the following day. We went back the following day waited an hour and a half, but that's typical for a specialist. And we LOVED her new neurologist. He was great with Harper, and she really liked him. He was the first doctor for Harper not to cry when being "messed" with. He did a lot of tests with her and basically said we still don't have a diagnosis, but all we know is that her cerebellum is under developed, which is causing the lack of speech, and cognitive delay. He said he was actually pleased to see her walking, because with her brain underdeveloped like the way it is, she shouldn't be walking. We asked if he thought she was autistic and he said no. Harper is very social and loves being around others, and other than her lack of speech (which is caused by her brain being underdeveloped) that is her only quality of a typical autistic child. He also said he does not want to do another MRI until she's about 4 years old, because of how dangerous it is to do an MRI for a child, but also, because he thinks all we will see is that it is still under developed, but it has developed. Again, this is ALL a waiting game. We have a follow up appointment with Dr. Ian Butler (her neurologist) November 7th, and a follow up appointment with Dr. Probst (her geneticist) in a year, unless if the blood work and urine sample came back negative, then we will see him as soon as the results come back. Same with Dr. Caldwell, her metabolic doctor, depending on what the results say will determine when Harper's next appointment is. Harper's 2 year check up was last week. We decided to not get her 2 year immunizations. We want to wait a while until we get some tests results back from her biomedical doctor to see if her immune system can handle them right now. Her pediatrician and nurse were VERY PLEASED by how much Harper has progressed! And that's all we can ask God for right now, is progression. It has been a very busy summer, ending with Brian's 30th and my 30th this month! I'm sure I know what our birthday wishes are for the year! We truly are blessed and have so much to be thankful for and so many things to celebrate!

Summer is here!

So lots to celebrate!!!! The first and most important thing to celebrate is we got Harper's genetic results in.....and they all came back NORMAL!!! Woo hoo, thank you God! This testing was the extensive, expensive, the whole EXONE testing, where they took my DNA, Brian's DNA, and Harper's DNA to see if there was anything missing or extra and thankfully it all came back normal. So my thoughts are that Harper might be Autistic. We have a geneticist appointment July 22nd and a neurologist appointment August 1st, so hopefully we will have more answers and a diagnosis soon! Currently in the mean time I am going to take Harper to a metabolic doctor to see if she is missing any nutrients or vitamins and I have changed her diet to a gluten free and casein (in all dairy products) diet because there is research that a gluten free/ casein free diet helps children with autism. There is a great website www.gfcfdiet.com that has been very helpful for me. This is the same diet Jenny McCarthy did for her son and saw progress. I also currently have her in swim lessons which will help strengthen her core because she still has low muscle tone and I am also still continuing her in her big muscle builders class. I'm hoping and praying that with a fun busy summer Harper will learn a lot! 

I had her in art class for a day then canceled her summer art class because Harper is very oral and likes to put EVERYTHING in her mouth so art class was more like a tasting class. Maybe she'll be ready next year! :)

This year has been quite a long road... More like a roller coaster with ups and downs of emotions. I am finally starting to feel for the first time that I enjoy my road and wouldn't change a thing. 

I have had so many friends share their friends blogs with different moms with similar struggles. If you get a chance, please read these three mom's blogs. They are inspiring, touching, and I look up to these moms and I hope I can be the best mom for Harper.

http://wheredidthebirdgo.com/2013/01/optimal-outcomes-dont-wait/

http://momastery.com/blog/2013/06/20/not-your-typical-mom/

http://sippinglemonade.com/dear-mom-with-a-prenatal-down-syndrome-diagnosis/

The first two blogs are about autism and the last one is about Down syndrome, but I feel a connection with all three of these moms. I know that we are on a beautiful journey and my only wish for her is happiness! :)

Some other good news is that I FINALLY got a PE job!!! I can't wait to do what I've always wanted to do- work with kids and help them be physically fit. Last week I had trainings for 4 days and I learned so much! Talk about fun trainings! I'm used to the typical boring writing workshops and now I'm playing double dutch jump rope and dodgeball! 

God has blessed me in so many ways and I thank Him numerous times a day, especially for my little blessing that is almost two! :)