Month: March 2015

Ins and Outs..

/ jannanbland / Leave a comment
Tomorrow will mark 4 continuous days of therapy for Samuel. He is adjusting pretty well, but there are many tears- mine included. When he comes home in the afternoons, he melts down terribly. He cries and wants to be comforted, yet is torn and wants to get down and explore. His head banging increases ten fold, and he is just worn out. I know the staff at his school is awesome to him and with him, so I am fairly certain that it is the change in routine and structure that has him so distraught. I am praying that he will adjust quickly and become used to this new way of life and learning. 



My sweet pea Maggie has had such a good week at school. She was so excited about her science class, because they were making mealworm habitats. Eeek! Her table named one of their  mealworm “families,” the Pickles. Fourth graders are so silly! She can’t wait for them to turn into beetles. She should have named them John, Paul, George, and Ringo, but her mama is old school. 

Gross picture of the mealworm life cycle. Ha! Never stop learning! 


Who I still see everyday when my 9.5 year old gets in the car after school. I can’t help it. My little baby is not little anymore.



My dad’s mom came for a visit this week, and Samuel got to meet his paternal great grandmother for the first time. It was nice, and my sister and nephew came to eat with us last night while she was here. I am upset that I forgot to take a picture of my Grandma and my kids. I cannot believe I didn’t just naturally do it! I’m the picture over-doer.

Here is an older picture of Grandma and her terrifying yorkie, Duffy. 



The GoFundMe page is now up to $460, thanks to some of the nicest friends in the world. If everyone could be so lucky….

So, that’s the update. Praying for a good rest of the week and for a well family. 

Here is the link for the page, again. Thank you all for contributing and sharing. 



Climb

/ jannanbland / Leave a comment
I have learned a near insurmountable amount of information these last months, and I am a mother of a child with a disability.  I have never uttered that sentence aloud or in writing since Samuel’s diagnosis. I have implied it, but I never could bring forth those words from my lips. It’s a treacherous journey through a valley of deep darkness before acceptance settles into the bones and soul. 


But, I believe I have made it out of this canyon and to the bottom of a mountain that I will climb throughout my time as Samuel’s mother. A beautiful mountain.

I stumbled, faltered, mourned, worried, and feared all the way across, and to be sure, I was not graceful most of the way. 
But, God got me there, and He has given me the tools and people I need in my life to begin the upward scale.  I will be steadfast in my climb. I will advocate for my child until the peak is reached. I will see the beauty around me as I travel, and I will continue to love my son so deeply that he will never know a life without. 


With this new-found acceptance, I have taken a leap of faith by creating a GoFundMe page to raise funds for Duplication15. This is a rare disorder, and every parent with a child like mine wants to help their child. 
I decided to put my energy and passion into helping our children. So, I set a goal for $5000. 
Truth be told, I was scared to take that sort of risk- to be vulnerable to others’ scrutiny, perhaps. I have always had such a fear of rejection and concern of what others may or may not think of me as a person. That short-coming is something that I still lean on God for each day. I remind myself that how He sees my heart and actions is what is paramount to journeying through my earthly life.
In 2 days, we have had 5 donations from friends, raising $300 for the Dup15 Alliance and for the conference this summer. 
We have had around a dozen shares on others’ pages, and I could not be more grateful. These precious people have taken the time to say, “I care about you, and I see how meaningful this is to you.”
And my heart and eyes are full. 

Thank you. 



No flu, for You!

/ jannanbland / Leave a comment

The past week has been so very taxing. Samuel has had Flu B, after already having Flu A in December. Flu shot fail for him. However, the rest of my family has been fortunate. Scott has had a pretty nasty cold, and every time maintenance mows the school grounds, my poor Maggie has an allergy and asthma attack. She sounds awful. 

Samuel made it 2 full days, or 16 hours of therapy, at his ABA school before getting sick. They have called and checked on him nearly every day, capturing my heart in the process. They are gentle, kind, compassionate people. They even sent Sam balloons and the sweetest flowers yesterday. I mean, how amazing is this! 

Flower Puppy 

So, this is what I feel like doing each time one of us goes into public. A little much? Yeah, I didn’t think so, either. 



Magpie

Maggie’s appointment went well with the orthopedic doctor. She has 4 curvatures in the spine, each curved between 15-17°. She will be checked again in 6 months, and if the curvatures have increased to 25° or over, she will need a brace to correct them. Her tailbone healed back pretty well but with an odd little turn, so if she does these doctor-given exercises, it should turn back, eventually. 
Maggie and her classmate were chosen out of the entire class to read their personal narrative pieces to another 4th grade class. She was so excited about this honor. The class they read to had to take notes, as a learning tool, to improve their own writing. I am a proud mother!  
Maggie’s strongest subjects are math and science, but she works extremely hard on writing, although she struggles with it at times. Love my girl! 


I haven’t blogged in a while, as it always seems that, medically, we are the most unstable family in the world. It has been one thing after another for much too long. I don’t know why I think summer break is the cure-all, but I’m sticking to my thought process.  Swimming, less sickness, and Samuel will be well on his way to adjustment at school. Fingers crossed and prayers being said! 



But, with all of the medical issues, there are many sweet happenings for the Blands. Samuel can say “da da.”  We are not sure he is saying it about Scott, but we are sure that, receptively, he understands that it means Scott. So, when we say: Where is Da Da, Samuel now turns to look at Scott. AMAZING! 
He is also visually tracking like a champ, exploring different walking surfaces without as many tears, and best of all—he doesn’t cry any more when he bangs his head. Thank the Lord above for his helmet. Good gracious, this mama’s heart and body can rest for a moment now! 




Sick day selfies

Therapy

/ jannanbland / Leave a comment
ABA therapy: Take One


After I dropped Samuel off at his new school, Scott headed to work, and Mag and I went home to get dressed for the day. I had decided that I wanted to drop Sam’s lunch off at noon, so I could also check in with the staff to see how he was coping. Karen, the director, is very soft spoken and incredibly kind. I can’t see Sam during the day, unless I call ahead of time, so they can separate him from the other kids. Because his school is considered a medical facility, it would be breaking HIPPA law for me to be with, or see, the other children. That is very hard on a mama’s heart, as I can’t even walk
him to his room each day to help get him settled. His therapist meets us in the foyer, and she takes him back. I have no idea why it bothers me so much, but it does. 
Anyway, at lunch he was doing great. He had a few crying spells, but eventually he began to play again. He had a hard time going down for his nap, as he is used to me rocking him still. But, he eventually allowed sleep to have its way. I am thankful for that. 
While Sam was learning, Maggie and I went to Jumpstreet, and she trampolined her heart out.
It was nice spending time with her alone. It has somewhat become a foreign concept, lately, and it reminded me of yesteryears when we only had one baby. I silently worried most of the day about Samuel, and when it was time to pick him up, I was about to jump out of my skin with sheer relief.  The report was great, and the staff just loves him to pieces. Maggie must have suffered a bit in silence today, too. She seemed more relieved than I did. She tried kissing every inch of his face, but my boy just wanted his mama. When he saw me, he cried his little soul right out. 
It was a hard day. But, it was successful. I poured my fears out to God last night, asking him to calm all of us and to keep Sam safe. Thank you, Lord. I praise Your name for making my day bearable and even somewhat enjoyable. Thank you for your grace when I need it. 

Changes

/ jannanbland / Leave a comment
Tomorrow is the big day!  Samuel starts his Applied Behavioral Analysis (ABA) therapy school. He took a late nap today, and it is nearly midnight, and he is finally  sleeping. I hope so much that this doesn’t make for a grouchy baby tomorrow. 

I washed his clothes, packed snacks and lunch, labeled diapers and wipes, tucked in a few of his favorite things, washed his new blanket, got out his new nap mat, labeled sippy cups, and on and on. 
I thought that doing all of these things would help me feel more in control of my emotions. But, alas, it didn’t. 
I have been so weepy on and off for the last 3 days. 

Fast forward to this morning:

I finally fell asleep; I just couldn’t finish my blog last night. Exhaustion set in. 
We dropped Samuel off at 8:30 this morning, and as they walked him
back, he looked at me like, “Where am I going, Mama?” 
It just broke me. I started sobbing like the over-protective mother that I am. Scott went with me, and I am grateful for that. 
I am home now, and I am not sure how I feel. I am already missing kissing his little squishy face and neck. Sigh….

Oh, how HE loves Sam…

/ jannanbland / Leave a comment

Today was helmet fitting day! I took my nephew, Chance, with me for backup. I was super anxious, just praying that God would calm my baby’s soul and that Samuel would tolerate this so desperately needed device. I even asked Maggie to say a little breath prayer for him during the school day. 

Hope Orthotics has been really wonderful to us, and their measurements came out perfectly. So, they didn’t have to add extra padding or do any adjustments. I am so relieved. His helmet is as light as a baseball cap. It is hard to believe by just seeing it, but holding it is totally weird. It looks like it weighs 10 pounds. 
When the doctor intially put it on him, there were many, many tears and screeches. He began to pound his little head with his fists and the toys in the room. Chance and I both had to hold it together. I was just a mess, as my thoughts, in those minutes, went straight to, “What will we do?”
Once we were in the car, he cried his little heart out and bounced his head back and forth on the car seat. I wanted to burst into tears because, as Chance said, he looked so defeated. 
He fell asleep after a few minutes, and when I got home and took him out of the car, he was completely different. It was as if he noticed nothing on his head. We walked into the entryway, and he saw himself in the hall tree mirror and smiled. 
He has had his helmet on since 11:30 this morning, and I am amazed. He even played a little outside with Maggie, after we picked her up from school. 
It is so strange how just a few months ago, I would have given anything for Sam to not hit his head. Now, I am just so grateful that he can’t hurt his head anymore. I wanted nothing else more than to hear him say mama. Now, I am just grateful that he has said one consonant. It really puts things into perspective. I will take any blessing, big or small, that God hands us. It is humbling. To me, this helmet is HIS mercy bestowed upon HIS child.  Jesus loves the little children….Thank you, precious Lord. 

Update

/ jannanbland / Leave a comment
Homefront:

So much has happened in the last couple of weeks. 

We had Samuel fitted for his helmet,and it is finally finished, so we are going for a final fitting this week. I am praying that he tolerates it well,  and that it keeps us all from being hurt. He has a forehead full of bruises; sometimes we just don’t get to him quickly enough to prevent him from hitting. 
He has, since birth, had trouble transitioning from sleep to waking. He was sleeping on me, and as he woke, his head hit me in my right cheek, and it immediately began to swell. This was after both of my lips had been hit and were in bad shape. I had to have a CT scan. The doctor thought my cheek bone was fractured, but thankfully it was just super swollen. The struggle is real! 
It is healing fine now, and I am trying to be more cautious with Samuel. 
His weighted vest came in, and as much as we were all hoping it would help, he just hates it and bangs even more. 
But, the weighted blanket my mama ordered, made by a wonderful company called SensaCalm, came in yesterday. It is a specially handmade blanket with individual pockets, so that the weight is distributed evenly. Because of Samuel’s size and height, his blanket is weighted at 4lbs. When I opened the bag, he started laughing at the bright blue color it is. I scooped him up and put it on him. He instantly stopped moving, became completely calm and drifted to sleep in a matter of just a few minutes. Scott, Maggie, and I were stunned. My parents were able to see it all on facetime. None of us could believe the effectiveness of the blanket. He ended up sleeping 12 hours last night. I cannot remember him ever doing that. Praising the Lord for this!
Here is a picture of him asleep on his daddy last night. The blanket is cotton and not hot at all. He is just a sweaty sleeper. 

This is the link to the Sensacalm site: 
http://www.sensacalm.com/

He is actually sleeping in the bed as I type. I don’t even know what to do with myself. He is snuggled into his blanket, and my arms are free!  I never dreamed in a million years it could help so much. 

How it works/helps:
“One of the most commonly used and “prescribed” therapeutic interventions in the Occupational Therapy world is the use of weighted products and treatments that involve what we call “heavy work”, proprioceptive input, and deep pressure. The therapeutic use of weight and “deep pressure” to the muscles, joints, tendons and ligaments allows the central nervous system to better interpret and integrate both tactile (sense of touch) and proprioceptive (sense of movement, body position, and pressure) input.
This therapeutic concept and particular treatment is used in schools, clinics, homes, and communities world wide. The use of weight and deep pressure is at the core of almost all OT treatments for SPD. It is safe, effective, and can make enormous differences in these children! Their families rejoice and daily life becomes more tolerable, physically calm, and emotionally regulated.”
http://www.sensory-processing-disorder.com/weighted-blankets.html

School:
We signed all the necessary medical and admissions paperwork for Samuel’s APPLIED BEHAVIORIAL ANALYSIS (ABA)school yesterday. He starts Monday morning, March 9th. He is in an intensive program that requires 30-40 hours of therapy weekly. I was able to talk with the director yesterday, and I was so excited that they agreed to let me have Fridays with Sam. So, he’ll be getting 32 hours weekly, and I will still have 1 day a week of just Mama and Sam time. That has done a lot for my anxiety about him going everyday for such a long time. I am just not ready to give up my baby, yet. Everyone is super nice, and once a month we will meet with his team of therapists and watch footage of his interactions, learning, new skills. We’ll discuss what needs to be worked on more, adjust his schedule if need be, too. 
They also have a monthly time for Maggie to come play with Sam in his environment. I think she is really going to love that.



Maggie:
Maggie is doing really well in school. She is sprouting in so many areas, and I am such a proud mama at how she conducts herself in class. She has an orthopedic appointment in a couple of weeks to have her tailbone rechecked; she fractured it over the summer. And, he will check the degree of her scoliosis. We are praying for no brace or surgery. 
I am looking forward to our girl time next week, while she is on Spring break. We are going to paint pottery, see a movie, maybe head out to a couple of museums. It is much needed, and I am thankful she will be with me during Sam’s first week of school. God’s timing is impeccable! 



Samuel’s new bag for school! 
I just loved it.