Sometimes you just need to go...

I have to say, today, today my kids are behaving wonderfully, and I am loving having time with them!

wow!

school is awesome!
After 3 days of second grade for Caleb he is adjusting awesome, and loving it!, and today being Logan's first day of Kindergarten (he was so excited to be dropped off!), I am so excited that I have this opportunity to spend time alone with Aaron. We took a shopping trip to Whole Foods to get some of his "special Milk" and while we were there, we went to the produce section, and Aaron picked out some peppers, Orange, Red, Yellow and Green...and so I grabbed an onion, some garlic, we grabbed some roast, and what do you know, dinner! and Aaron picked it out!

Now, you might say, so what? but what you don't know is that getting any of my kids to behave in a store is like herding cats, they scream, they run, they fight, so this was a wonderful chance for me to spend some time with Aaron, and teach him that shopping trips can be fun, and not full of chaos!

when we got home, he helped me prepare dinner, and then he got all excited as I cooked, and I hope when I pull it out of the crock pot tonight that he will be just as excited to eat it.

Medically, he seems to be doing better, except for the fits, but we see the pediatrician tomorrow to discuss what it could be. right now, I am just happy to have the time to work with him. He is making huge strides, he is talking more, and going to the bathroom on the potty (yay) and all in all, improving little by little every day!

a trip and a half...in more ways than one!

well, we took the kids to Disney, surprised them, got in the car, they were surprised, it was fun, and it was HOT!!! heat index of 110 or more every day, and in the back of my mind every day was "what if" what if he has a seizure, what is he has a stroke, what if he isn't ok....well, he was, for the most part ok. only a few small things stuck out to me. he refused to eat almost anything. he drank a lot ( I will take that in the heat!) his sweat smells like vinegar (not sure what this means) and he is aggressive in the heat. He punches, he kicks, he screams, he pinches, he stomps his feet...sigh...so we shall see what all this means, but what it does mean, is that we can go places, for now, he is a "normal" healthy child who can travel with very few meds, and as long as we keep Milk out of his body, and put Culturelle in every few days the bloating has been down.
We have an appointment with Pediatrics in September to talk about the fits, they are not normal two year old temper tantrums, and he is not easily distracted or easily redirected, so we will work on it.
in time.
I am, on the other hand, applying for jobs. I need to work, he needs time away from me, and I need to feel important. I know taking care of him is a lot, taking care of all of the boys is a lot, but i need something that is mine...so that is where the Johnson family is at right now. one day at a time...

some pictures of our boys!

10 days later

and it is amazing the progress he has made!
I can not believe that one medication could have this much of a difference in a child. He is "talking" and walking better and trying to communicate and he is happy, and less aggressive and just a beautiful little child!!!!
He says mommy and momma again (it has been months) and he says dada and is trying to say his brothers names, and just this last weekend, he has been trying to but sentences together "hi Caleb" "bye pa" and he even this morning signed Milk while standing at the refrigerator and knocking on it's door!

I can not believe the difference and I am just awesomely amazed.

Caleb and Logan have been awesome at helping with this transition too, they are helping him sign and encouraging him to talk with them, and they are helping me keep him away from the stairs. It has been a crazy few weeks transition, but I am so glad that he is better! there is still more testing to be done, and reality is there will probably be a lot more yet to learn about Aaron, but for now, I am happy he is progressing! Early intervention is going to be coming out every other week again, just to make sure I am up to date with my signing, and that he continues to improve his vocabulary, and we will also have a SLP come out to evaluate him and make sure we are on the right path.

Here is Aaron with his aids in! Isn't he soooo happy!!!!!













And here he is listening to his brother Caleb! Logan was not willing to stay when he saw the camera come out!

The Beginning...

My name is Melendy, and I am married to Stephen. We have three beautiful sons. Caleb is the oldest, and he was born in September of 2003. He is our smarty pants! He could do puzzles early, and had an interest in rocks and sorting things very early. Caleb grew a very strong obsession with elephants at an early age as well, and has held to this obsession for a while! Caleb can be strong willed, but he prefers to be a lover...he cuddles, and wants to sooth everyone's ouches. Then came Logan who was born in April of 2006. He is our Mr. Independent! he wanted to do things his own way very young. He is just as interested in puzzles and animals, but he prefers monkeys! Logan is extremely strong willed, and loves to be the one caring for others. Then came Aaron. Aaron was the most difficult pregnancy by far. I spent 16 weeks on bed rest due to premature labor with Aaron. He was born four weeks early in November of 2008, and was for all intensive purposes healthy. the first night in the hospital with him, i realized he wasn't responding to me talking to him. I figured he was tired, but my mommy senses immediately kicked in. At 10 weeks actual age (6 weeks adjusted) he got RSV and had to be hospitalized for a few nights. I realized at the hospital how little he responded to sounds (I was already worried about his vision and hearing). so I called the hospital who delivered him, and did his newborn hearing test. He had "passed" his newborn screen. It turns out that there are two parts to a hearing test. the first puts oressure into your ear to see if your ear drum works, the second actually transmits sound into the ear and tests to see if there is a brainstem response. the second half of this test was never done at the hospital. so I demanded an appointment for a retest. I was given one that day, and under not the best circumstances (i went alone with 3 children!) it was decided that his ears were not responding to sound, and that he could be deaf, or he could just have a lot of wax in his ears! (seriously what the doctor said) so I went looking for a second opinion. This second opinion was found in Boston, at the Children's Hospital. the doctors their were eager to meet Aaron, to test Aaron, and to help us down the right path for him! at 23 weeks of age, just shy of 6 months old, Aaron met with his new audiologist and ENT. they said the structure of his ear looked good from the outside, and that he was really too young for any test in office to be conclusive. he was originally scheduled for an ABR (Auditory Brain stem Response Test) in June, but he became ill just a few days before, and the procedure had to be postponed until August 6, 2009. He was found to have severe to profound hearing loss, and the next steps are still up in the air! I plan to use this blog as a journal as well as an informative tool for all of the people lucky enough to be in Aaron's life! we know that God will get us through this, but we also know he gives us the people in our lives that he does so that we can persevere!