Monday, March 15th, 2010

Meet Jorden Little

Jorden is 12 years old. He is the twin brother to Erin. He was born on April 30, 1997.  The twins were originally supposed to be born on August 18^th.  They were both born at 24 weeks gestation, and Jorden weighed in at a whopping 1lb 15 oz. He was the first to be delivered by normal birth. The following day after birth, he had an ultra sound done on his brain to find that he experienced a bleed on his brain that was labeled as a grade III bleed. (1 being least severe to 4 being most severe). Jorden experienced many different challenges the first couple months of life such as difficulty breathing, jaundice, and also was diagnosed with ROP (retinopothy of prematurity in both of his eyes) He was on oxygen for nearly 1-1/2 months. The first couple of months in the Neonatal intensive care unit Jorden had a few different surgeries such as: a bilateral hernia removed, laser surgery on both of his eyes due to the ROP, and one of his main veins in his arm grew around his main I.V pick line which caused the Doctor’s to go in and remove the I.V line by surgery, which caused the entire vein to be removed. (I have been told that this is something that hardly ever happens). Jorden was in the NICU for nearly the first 2-½ months of his life. He was sent home using a heart and breathing monitor for the next 6 months of his life.

Around 5-6 months of age, Jorden developed acid reflux, which caused him to have difficulty eating or holding any food down. He would often projectile vomit after every feeding. This caused his bones to become demineralized, which then caused the bones to become brittle. At roughly 6 months of age, both of Jorden’s legs broke due to lack of nutrients. Due to being on oxygen at an early age, Jorden developed lung challenges and became asthmatic. Therefore, he continues to have frequent breathing treatments using the nebulizer or an inhaler.

Jorden has worn glasses since one and half years of age and has been under the care of a specialist for his vision. At age 8, Jorden’s retina in his left eye became detached which caused the loss of vision in that eye. At that time, his right eye required surgery to prevent retina detachment. At age 9, Jorden required another surgery on his right eye due to suspicion of the retina detaching. At age 12 (one month ago) he had a follow up surgery to remove a cataract in his left eye that was developed due the retina being re-attached.

Jorden began walking at age 1-1/2 years of age. He began talking about the same time, and was always extremely verbal. He had botox injections in his left hamstring due to walking on his toes. AND he continues to wear a night  brace in order to stretch his hamstring.

Jorden has received Physical Therapy, Occupational Therapy until he was about 7 years of age. He received Speech Therapy due to feeding/sensory issues until he was also 7. As similar to his sisters he received Early Intervention Services since birth and wore a DAFO (leg brace) on his left foot, due to toe walking. His left foot is where his cerebral palsy has been most prevelant. He has been fully integrated in the General Education curriculum for all of his life with limited and now requires no support.

Jorden is an amazing young man, who adores his family. He has a passion for God that is rare to find at such a young age. He loves video games, karate, computers, loves to listen to music, and loves to play the drums. Jorden, like the rest of his family loves being around others and loves being included. He is a delight and is a blessing to know!

Until Next Time,

E

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Saturday, March 6^th, 2010

About 5 years ago I was in an intensive Graduate program to receive my Masters. During that time it felt like everything around me was falling apart. I was transitioning and learning how to parent all by myself, and with that…Taylor was demonstrating severe behavior challenges, I was just told Erin had a cyst in her nose and that it may be cancerous, which required it to be removed immediately, AND that Jorden’s left retina in his eye was detached and the same was about to happen to his right eye. He needed surgery right away or he could be blind!!

Talk about overwhelm!!! I was done! I felt spent! I had a moment where I just about gave up on everything. I went to my professors during class one night and told them “I quit! This is too much…I can’t do this all by myself”. My professors quickly called a meeting with a group of my peers and they all expressed how they felt that finishing the Graduate program is what I am supposed to do. They acknowledged how much they believed in me and in order for me to finish they would support me as much as they could by making arrangements to have someone take notes for me and they would extend times on exams so that I could care for my children first. They knew I was exhausted and at the end of my rope at that point. I had never shown this type of emotion and upset before.

I came back to school the following day questioning everything. Questioning…why I was given these responsibilities, questioning if I had done something really wrong to have children with the type of challenges that they had, and if I did do something wrong….why would God punish my children? They didn’t deserve this!!! They were the innocent! Why did they have to go through all of this? AND then….I went to sit down at my seat that I sat during every class and someone left a piece of paper with the following story on it that changed my life. Please read and I hope it gives you the peace it gave me!

Untitled

Did you ever wonder how mothers of handicapped children are chosen?

Somehow I visualize God hovering over Earth selecting his instruments for propaganda with great care and deliberation. As he observes he instructs his angels to make notes in a giant ledger:

“Armstrong, Beth; patron saint, Matthew.”

“Forrest, Marjorie; daughter; patron saint. Cecelia.”

“Rudledge, Carrie; twins; patron saint…give her Gerard. He is used to profanity.”

Finally, he passes a name to an angel and smiles, “Give her a handicapped child.”

The angel is curious. “Why this one, God?” Could I give a handicapped child to a mother who does not know laughter? That would be cruel.”

“But has she patience?” asks the angel

“I don’t want her to have too much patience or she will drown in a sea of self-pity and despair. Once the shock and resentment wears off, she’ll handle it.” I watched her today. She has that feeling of self and independence that is so rare and so necessary in a mother.

“You see, the child I’m going to give her has his own world and that’s not going to be easy.”

“But, Lord, I don’t think she even believes in you.”

God, smiles, “No matter, I can fix that. This one is perfect. She has just enough selfishness.”

The Angel gasps, “Seflishness? Is that a virtue?”

God nods, “If she can’t separate herself from the child occasionally, she’ll never survive.

Yes, there is a woman I will bless with a child less than perfect. She doesn’t realize it yet, but she is to be envied. She will never take for granted a ‘spoken word’. She will never consider a ‘step’ ordinary. When her child says “Momma’ for the first time, she will be present a miracle and know it! When she describes a tree or a sunset to her blind child, she will see if as few people ever see my creations.

“I will permit her to see clearly the things I see…ignorance, cruelty, prejudice…and allow her to rise above them. She will never be alone. I will be at her side every minute of every day of her life because she is doing my work as surly as she is here by my side.” “And what about her patron saint?” asks the angel, his pen poised in midair.

God smiles, “A mirror will suffice.”

-Author Unknown-

The person who left that has no idea how much they changed my life that day. Every time I am having a bad day or question if I am doing things the “right way” I read this story and remind myself that God must really think I’m all that and a bag of chips to have had that much faith in me to choose me to be Taylor, Erin, and Jorden’s Mom. AND you know what else I do? I thank him tremendously! I GET to be their Mom!

Until Next Time,

E

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Tuesday, March 2nd, 2010

It Doesn’t feel like there is never enough time in the day! I know I feel like that for sure! The days seem as if they are moving faster and faster. I don’t know…maybe thats just because I’m in go mode all the time…and there is always something to be done. I can tell I need to slow down for a bit. It is starting to have a toll on me, because my patience is starting to feel tested and I feel grumpier than normal. I thought today I would give you a brief update of what’s going on in each of the lives at The Little House.

Jorden had his follow up eye appointment on Friday with the retina specialist. I can catch myself praying even more than usual when I walk in that doctor’s office…praying that his retina is still attached (we were warned that it could detach at any time)…so gotta live on faith on that one! So far after…2 1/2 weeks his eye looks great. He went back to school last Tuesday and the doctor says that his retina is still attached and the eye itself is healing well. He even decreased the amount of time we have to give Jorden drops from 4 to 3 times a day…so it looks like we are going in the right direction!

Miss Erin on the other hand continues to have a challenge acclimating to all the changes in her medicines. This all started when the doctor added a new medicine due to the frequent seizures she was having. The seizures stopped but then severe stomach aches, vomiting, with sweating spells followed. She went through that for a couple months and we realized the change in medicine was causing her severe side effects, so we are in the process of changing the medicine again…which seems to be worse. However, it takes along time to slowly add another medicine while taking others off….therefore, we need to be patient and wait at least another few weeks. Uggg, I feel so bad for her. This type of situation is such a challenge because we have to wait till her body acclimates to the medicines. It is definitely where patience comes in, therefore; this is not the time for mine to waiver. It is evident that she has lost weight and even though I know it has been difficult for her she never seems to stop smiling! I am starting to believe that what she is eating is not settling with the medications that she is taking. It seems that when she eats any type of food with milk…she vomits shortly after. So, I have cut out most dairy from her diet and we are keeping a log of what she eats the days she gets sick. This week, we will be getting her blood checked to make sure nothing else is going on that we are missing.

Taylor is doing well. She’s as spunky as ever! I have been pushing her to drink more water, therefore; it seems as if the headaches she was having are not as frequent as they were. The year anniversary to her Shunt revision is coming up…and it is great to see all the gains she has made in the past year.

AND me? I guess you can say I’m good. I can complain, and where would it get me? Will it get me on an island in the Bajamas? Hawaii? Figi? If so, then I’ll find something to complain about…however, I know it doesn’t work that way. I’m just living day to day, enjoying the blessings I experience along the way. Some days are more of a challenge than others. The great thing is…I get to go to sleep at night and wake up to a new day!

Until next time,

E

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Monday, February 22nd, 2010

Until Next Time,

E

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Friday, February 19th, 2010

It is two days after Jorden had his eye surgery and he is doing awesome! He is a little uncomfortable (as expected).

Here is a video of a synopsis of Wednesday, Jorden’s eye surgery…I thought it would be great to make for children or families going through similar surgeries to know what can be expected.

Until next time,

E

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