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! :)

Turning Negative into Positive!

Well thank you to everyone.... we were able to get the genetic testing done. We had it taken in March. They had to draw blood from Harper, myself, and Brian. We should know within the next month of the results. Since I knew it would be a while I didn't really think about the results, but now that I know that I could get a phone call any day now I'm starting to get nervous. Brian and I have also come across the idea that Harper might be Austistic. We are not 100% sure and we will wait to meet with the neurologist to ask him, but when I was reading Parents magazine it was talking about SPD and Autism. Harper fit most of the check boxes. Lack of communication, she doesn't initiate eye contact with others, she HATES to have her hair touched, and her nails clipped, she doesn't ever express hunger, and she likes to flitter her fingers across her face to see the stimulation, etc. I'm just so ready to have a diagnosis so whatever she has whether it be Autsism and/or a genetic syndrome I can be proactive and start doing everything I need to do for her to help her be more successful! I know whatver the results are that we are a strong happy family and we can get through anything. It definitely gets tough to not ask God, "Why?" But I have to remind myself that God's plans are better than my dreams. We have been so pleased with Harper! She is continuing to have physical therapy and speech therapy. She started to wave bye-bye and blows kisses. She also runs, climbs, jumps, marches and is NON-STOP! Talk about a work out chasing her everywhere! Unfortunately with Harper being almost two and non-verbal she is starting to have some temper tantrums so we've been trying to find the "right" way to deal with those. Her school, Children's Courtyard, told me about two weeks ago that they felt like they weren't meeting her needs because of her temper tantrums. Side Note- Harper has really bad temper tantrums at school and not at home. She will have some tantrums at home, but they are not as intense as they are at her school. So they had myself, her pediatrician, and her teacher fill out paper work to send to corporate to make sure they were "meeting her needs." Her pediatrician was shocked when I brought Harper in to talk to him to have the paperwork filled out. Her therapist was shocked that that the school even brught this up as an issue. Well I just found out Friday that they are NOT meeting her needs to they told me I had two weeks to find somewhere else for her to go. Hearing that as a mother is heart breaking and all I could do was hug and squeeze my precious Harper. Her doctor and therapist were shocked at this news and didn't feel like her needs weren't met. Harper's therapist also said it was a blessing that Harper is no longer there, because if they feel like they can't meet her needs then she shouldn't be there. I want Harper to be at a school where they love her and they will work their hardest to see her succeed and do well. So the negative turning into a positive is that when Harper was 3 months old I put her onto the waiting list at First Baptist Kids Academy (this school shares the same parking lot as the school I teach in.) Well the day after Harper's school told me the horrible news, I called First Baptist and they told me they had her on the list to start in the Fall. Woo Hoo! My prayers were answered! I also told them about Harper and her developmental delay, her lack of speech, her tantrums, and how she will have two therpists coming to school to work with her and they were very responsive and they said it will not be a problem. :) Then problem #2, now I have to find a place for Harper to go this summer for two days a week to keep her around other children and within a structered environment. Well I found this other church, Community Baptist, two miles away from our house, that has a Tuesday/Thursday Mother's Day Out program for June and July. Yay!! I also have Harper signed up for Summer swim lessons, gymnastics, art class, and a music class for once a week. We will definitely try to stay busy and active! Now it's just the waiting game for the gentic results and for the doctor's diagnosis. Sending prayers up to God and positive thoughts!

Welcome to Holland

A friend of mine that I work with, Amanda, sent me this story, and it couldn't have described more of what Brian and I are going through. What a positive outlook, but descriptive way to describe being a parent with a child with special needs.

WELCOME TO HOLLAND
by
Emily Perl Kingsley.

c1987 by Emily Perl Kingsley. All rights reserved

I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......

When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."

"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."

But there's been a change in the flight plan. They've landed in Holland and there you must stay.

The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."

And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.

But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.

Our active little munchkin...

Harper has been so active now that she is walking everywhere. She LOVES the park and we go there everyday. Her favorite is the swings, BUT every time we get off it's a tantrum because she loves the swing and NEVER wants to get off. 😁

We also tried a toddlers in tutus class and she did so well. She loves watching others and mimicking them. But unfortunately the classes are Wednesdays at 4:30 and I have a faculty meeting every Wednesday until 4:30. So I looked into another class and found a class called big muscle builders . How perfect, because she has low muscle tone! So we tried the class this past Saturday and she thoroughly enjoyed it! We signed her up for every Saturday through the end of May. She marches, and goes over, under, through tunnels, and swings on poles. Its similar to The Little Gym, but I think a lot better.

Another AMAZING thing I think EVERY mother should know is to make your child a smoothie!!!! When we were in Riviera Maya over the Christmas break, my aunt and mother in law had to watch Harper because she got sick the day before we left. Which by the way was a very difficult decision to make but it was what was meant to be and best for all of us. While she was staying with her auntie Lynne she had made her a smoothie each day. In the smoothie she put in spinach, about 4 oz of no sugar apple juice, 2-3 tablespoons of unsweetened applesauce, one to toddler yogurt, and fruit. Harper loved them. So of course when I came home from our trip, (which was much needed for me and my hubby) we went out and bought the blend tec blender to make her these smoothies. From that day on we have been making her smoothies and now I add Kale, carrots, liquid multivitamin, and DHA omegas. I suggest to all moms to make these. Every day Harper looks forward to her smoothies and since then (knock on wood, she hasn't been sick.)

I'll post some pics soon of Harper in her Toddlers in Tutus class and in her big muscle builders class. I'll also post some of our Christmas Riviera Mayan vacay.

The only update we have for now is her next neurologist appointment in April 4th.

Xoxo,
Amber

"FAITH- it does not make things easy, it makes them possible." Luke1:37