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Archive for February, 2009

Wow. Some days therapy is sooo hard. Not just on him, but on me too. Wednesdays are the long session days. It starts out at 9:15 am with M for developmental therapy (DT). We’re with her for one solid hour. Luke is so “shy” and she really pushes him and he’s not comfortable with her yet. It’s hard for me to let her do things that are out of his comfort range. I just want to say “He doesnt like that” and take him home back to where he is comfortable. A lot of what she does crosses over with speech so that’s fantastic that he’s getting that reinforcement. M has been trying to get Luke an OT (occupational therapy) Evaluation or a PT (physical therapy) evaluation. I havent gotten the call yet about scheduling. She had Cory (part owner of KIDSource & physical therapist) come to look at Luke. He went over and pick Luke up and he didnt cry. We all looked shocked… Luke is known as the cryer up there. Anyways, as soon as Cory picked him up he said, “Yeah, he’s got low tone.” He said low muscle tone wasn’t the same as muscle strength. He kind of wiggled Luke around while he held him under his arms and his limbs just were like jello. He kind of cradled him upright and shook his arm. He was like a noodle. Apparently, at this age (and younger) kids should tighten up their muscles when you pick them up, if you move their arm it shouldn’t be floppy, and if you hip carry them they should squeeze their knees to help hold on to you. I knew instantly Cory had to be right. The few occassions that Luke has squeezed me when I hip carry him it shocked me. He’s only recently squeezed in the past couple of weeks. I can only recall two times he got angry and wanted down or to move closer to something and he squeezed with his knees.

Cory said that when Luke hits 15 months he will enter the next age bracket and we can then do a PT/OT evaluation. Luke is 13.5 mos now and he wants me to work on some PT/OT stuff at home. He gave me lots of things to try. M has all the paperwork ready to go so the day he turns 15 months we can do the eval. They seem to think he needs PT. Luke is pretty unstable when he walks though so, Im sure it would help. He pretty much walks like he’s drunk. He has a “wide base” when he walks, meaning his stance is wide between his legs to compensate for his balance issues. He has made no improvement on walking since he began walking at 10.5 mos.

Also, during DT something happened.. Luke broke down.. and they came to the conclusion that he not only has feeding sensory issues but also other kinds of sensory issues. I kind of felt like this was coming on but what NOT going to pursue it. I’m shy, Nick is shy.. I was hoping Luke was shy. Anyways, I won’t go into all that right now. It’s kind of stressful.

So, at 10:15 C came to start ST (speech therapy) with a very tired Lukie. It was mess. He just doesn’t get as much out of ST when he has been there for an hour already. We’re trying to get M’s schedule figured out and maybe we can come another day so Luke doesnt have to struggle with being there for 1 hr 45 mins. They would rather us combine therapies though and help Luke adjust to accepting it. Blah.

I had a photo on my iPhone ot show C.

photo

See his tongue? The right half is curling to the left side. He does this sometimes and I thought I would ask if it had anything to do with his trouble eating. She asked if he did anything differently on one side to the other.. like.. half a smile be delayed. Well, actually.. yes! It was his trademark early on that he did a ‘half smile’. Today she actually caught him doing a half smile and referred to the photo to see if it corresponded to the side she saw delay. She said she needed to think on it and watch when he eats more before she can make any conclusions.

Also, he’s still got that “thing” on his neck, is running a fever for day #8, and the antibiotics are upsetting his tummy still. The kid doesn’t feel too well, so he’s not eating solid foods too well. Maybe just a bite or two here and there. He’s kind of stated cycling backwards in his eating because he is sick. C wants us to watch that. If he continues to be hot and cold with eating she said we’ll really need to “Do something” about it. Im not sure what but I didnt like the sound of it.

On a brighter note, I did get a fresh urine sample to T in neurology at ACH. In 4 – 8 weeks we will have the results of the PKU test.

sleeping

How cute is this?! He’s covering his face up while he sleeps.. And see that nasty lil cut finger? The sneaky lil dude grabbed my coke can and stuck two fingers in the opening and proceeded to throw the can on the floor! He cut two fingers! It just bled and bled. He’s a trooper though!

shoe

And look what mysteriously showed up in the fridge! Luke is my lil “door man”. If I open a door I call him over to shut it when I need it shut. Most of the time I get shut in whatever I’ve opened though. For instance, I often get shut inside the pantry, the fridge, the closet, etc. He cracks me up! He also loves to “knock knock” too. He’ll close himself in my walk-in closet and yell out, I then say “Lukie, knock knock!” and he bangs 3 times on the door. Always three times! Then I open the door and let him out.. Rinse, repeat.. 50 bagillion times a day.

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Grandpa, this one is for you! 

music

Luke warmed up very quickly once great grandpa broke out his guitar.

guitar

playing music

listening

Luke has been really enjoying a selection of Ricky Skaggs lately from the iPod country/bluegrass playlist in the kitchen. Luke loooves music. OH man, it’s a battle to make it past the iPod radio dock most days without him crawling up me and over my shoulders to get to the counter where the dock sits. He particularly enjoys it if I place the dock on the floor so he can push the buttons and make it change songs. You can tell when he really likes a song when he starts to sing along. Mostly, it sounds like high pitched whining or moaning. It’s cute most of the time, but sometimes he needs to find a new pitch. *twitch twitch*

Here’s a few videos of Luke and his great-grandpa … 

This first one is only 1:16 secs long. Grandpa actually got to play a bit of a tune in this one and Luke tries to keep time with his shaky toy.

This one is :37 secs. Luke really gets into his shaky toy and singing a little louder.

Those two guys I love very much.. and they love their music!!! 

 

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What a blessing he is! (Photo Post)

eyes

He shows us everyday what it means to be blessed.

rock

Apparently, Luke really liked this rock found on a walk early today with my mom.

This afternoon, Luke took off out the back door half naked! All he had on was a disposable diaper and button down shirt! It kind of reminded me of Tom Cruise in that movie where he sang some song. (Yeah, mommy brain..)  Oh, and yes I know our grass is TERRIBLE is the backyard.. Nick will probably chastise me for posting these!

grass 1

He was headed to his swing and fell in the grass. That’s when Harmony, our dog, got excited and started running at top speed around the yard! 

grass 2

Luke loved watching Harmony race past time. He would whip his little body left and right to watch her! 

near miss

I promise, that expression is one of excitement. I didnt realize at the time just how close Harm was getting to him. He was literally squealing and shrieking with delight every time the dog would race around him. 

laugh 

I didn’t mean to get a photo of dog rear, but Luke there in the back ground is pretty cute flinging his arms around!

anticipation

Anticipation!

flying

Check out the shot! Harm kept jumping off the terrace and I caught it! Luke screamed with delight every time! I really wish I could’ve gotten it on video.

flying again

last one 

Harm got so close! We stopped here… waaaay too close for my comfort!

And lemme, tell ya, the kid loooves his swing. Though, you can’t tell it here. He was getting pretty sleepy from his hard day of playing (and not feeling well). I used the setting on my camera that does a series of shots to get these.

swing

swing 2

swing 4

He’s a gift from God.. such a joy and blessing!

Behold, children are a heritage from the LORD, the fruit of the womb a reward. Like arrows in the hand of a warrior are the children of one’s youth. Blessed is the man who fills his quiver with them! He shall not be put to shame when he speaks with his enemies in the gate.
(Psalms 127:3-5 ESV)

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One of those precious moments

Because Luke has a seizure disorder, we don’t yet feel safe letting him sleep in his own bed.  He’d probably do just fine, but we aren’t taking any chances.  We just love having him with us, even though we didn’t intend to co-sleep.  Last night at about 3 A.M., I woke up because I felt a big wet kiss on my cheek.  Then, nothing… He apparently woke up, crawled over to me (we have a large, King-sized bed), kissed me on the cheek and immediately fell over and went to sleep.  It was one of the sweetest things he’s done ever… 🙂

It sure is wonderful to wake up to the sound of his giggles in the morning!

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Nick was helping a friend of his look up some information on her daughter who has recently started having seizures. He came across an article or webpage about the PKU test that is state mandated that all babies get 12-24 hr after birth in the hospital. This caught our attention…

the disease may present clinically with seizuresalbinism (excessively fair hair and skin), and a “musty odor” to the baby’s sweat and urine (due to phenylacetate, one of the ketones produced). In most cases a repeat test should be done at approximately 2 weeks of age to verify the initial test and uncover any phenylketonuria that was initially missed.

Untreated children are normal at birth, but fail to attain early developmental milestones, develop microcephaly, and demonstrate progressive impairment of cerebral function.HyperactivityEEG abnormalities and seizures, and severe learning disabilities are major clinical problems later in life. A “musty” odor of skin, hair, sweat and urine (due to phenylacetate accumulation); and a tendency to hypopigmentation and eczema are also observed.

It’s ironic that Luke has many of those symptoms or signs, if not all. He has the seizures, the fair skin and hair with blue eyes (Nick and I are dark skinned and have dark hair with dark eyes), has stinky pee (but who doesn’t have stinky pee?!), didn’t hit any milestone on time except sitting up, crawling and walking which are all physical milestones (I’ll come back to this), was/is in the low percentiles for head circumference, has possible impairment of walking (will be evaluated soon), abnormal EEG, possible learning disabilities (will be evaluated once he is old enough), has hypopigmentation on several body parts, and has severe eczema. 

 

Yes, it could ALL be a huge coincidence. I pray that it what this is because if not, the only cure for PKU is a very strict no protein diet. He’s already dairy and soy intolerant so it would be a struggle. Nick and I could never forgive ourselves if something later down the road happened and we could’ve prevented it with just a simple urine test. 

Luke’s neurologist completely agreed to have a test run, but not the PKU. At this stage it is called an Inborn Error Screen. It takes 6-8 weeks for the results to come back. 

Friday I picked up a ‘pee bag’ and container from the pediatricians office. I could NOT manage to collect the pee! I really wanted to get the sample to ACH so that it could be sent off immediately so we hung around Little Rock at the park with my mom. Luke refused to drink his goo from his sippie cup. He has to drink apple juice halved with water combined with simply thick to help his aspiration problem. I broke down and had him drinking out of my water bottle. 

park       

I was pouring water down that little throat! I really didn’t want to wait over the weekend to take the sample in!

park 2    

Look at him cross those little legs! You know it’s a sign his grandparents are photographers when he does that! After a while I checked his diaper.. another miss! We headed home to try again later. 

park 3    

Isn’t he gorgeous? He had a good time at the park though, fever and all. Look at him pose! How funny is he?! Anyways, we did catch a sample. Nick had the trick.. start the bath water and let him stand at the tub. He pees 100% of the time! Easy catch.. we just had to wait long enough! So, now I’ve had a cup of pee sitting in my bathroom all weekend. Surprisingly, it’s not grossing me out. It’s amazing how motherhood changes you.

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Where we are today

Nasty Neck Node

I do have a couple photos that he’s smiling in but this crying photo shows the ‘thing on his neck best.I call it a ‘thing’ because Im not convinced it’s   lymph node yet. 

So here’s the story: Monday morning we were lying in bed and I felt a bump the size of my knuckle on his neck towards the back. Midday my mom was     over and she felt it and suggested that it did in fact need to be checked out. That shocked me! I thought he was going to give me some story about how it happened to me as a kid. So we made an appointment for that afternoon. We saw the first doctor who could take us at our clinic and she said it was “probably” a lymphatic infection and that we would try a round of antibiotics and “see what happens” 

The “thing” is hard, about an inch to inch and a half across and I can’t tell if it is tender. 

Day two this “thing” got incredibly massive. It looked like a goiter only in the wrong place. It was very scary. We got an appointment for Thursday   morning since he was running a fever with it. By the time we saw the same doctor again it was back to its original size. She wanted us to wait it out and if it got bigger to come back immediately. 

While we were there, I showed her these pimply bumps Luke has all over his legs, diaper area and tummy. He’s had these things for months but they came and went frequently I wasn’t worried. More or less I was curious what it was. She called it molluscum and said he could have it for months. Well, we’ve had it for months! She said that he’ll just have to outgrow it and to not be concerned unless any of the sores look infected. So, now the little man has this strange virus. 

 

But, on a better note, therapy is going well I suppose! 

KIDSource

Luke has now started warming up to the place and the room we are in finally. Here he’s playing at a toy table before therapy one day. 

Christina is so great with Luke. She’s our speech therapist who is doing the speech and feeding for Luke. First I’ll talk about speech. He came into speech with two sounds – ‘ah’ and ‘da’ – and it was mainly ‘ah’ for everything. It took a lot for Luke to start trusting her since he’s so shy and scared of new places and people but she’s so gentle and patient he gave in and came around. She’s giving us great tips and things to work on at home with Luke that meet his goals for therapy. I really like that we have goals to meet and specific things to work on at home to meet those goals that are specific to Luke. He’s started to make more sounds in general and now has ‘ah’, ‘ba’, ‘da’ and ‘uuuh’ for the word up. He’s making sounds when he wants things, and he’s starting to really catch on to labeling more objects and  understanding more phrases. 

When he was tested at 11.5 mos he tested at a 5 mo level across the board. I was doing everything I could think of to help Luke but Christina’s technique works MUCH better! She’s a pro. Luke is making good advances and we’re modeling age appropriate play for him since he’s behind on that. He still wants to chew and throw instead of inspect and play. Yes, yes, I know kids advance at different paces and “they all catch up by 5” but, when he’s been through what he has you have to keep a close eye on his development. Anyways, enough about speech!

The feeding therapy has BLOWN ME AWAY! Luke went from eating literally nothing, gagging and vomiting to suddenly eating purees and reaching out for different foods. The prescription for therapy was to get him in the high chair three to five times a day. Did you get that?! Yes, it changed our lives, literally. It was almost as if he were a newborn again needing to eat every 2 hours. It was hard getting through daily life trying to make sure he was in his high chair that often. He needed to see lots of different foods to become comfortable with it. Then, the goal was to get him to touch it, then to pick it up, meanwhile I was to cheer at anything new he did. I would also have to take foods and touch his hands, arms, shoulders, face, then lips and mouth. At first he wouldnt let me touch his hands, but he became much more accepting eventually. We still have our bad days and good day with eating. He still throws up, gags, refuses food sometimes but we’re working through it. I’ve learned so much about how NOT to get a toddler to eat, just ask me if you want instructions on what not to do! 

 

Eating

Not happy

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Starting to blog

For real this time! I really want to start keeping a journal about life with Luke. I had started a private journal online 3 weeks after Luke was born but failed to keep it up because it seemed pointless. Maybe I can keep this up if I know people are out there wanting to read about him. It’s been 13 months since Luke was born and I really feel the need to document what he’s been through in these months. I dont know why but I have kept every hospital bracelet from every ACH visit, I have all his scheduling papers, and anything related to his health I’ve kept. 

 

I keep all this documented as if I really think he’s going to be interested in how many times he saw the doctors in one month. So, I guess I do it for me. I still haven’t figured that one out though. 

 

Anyways, I would like to use this blog to keep family and friends updated on how he is doing and progressing and where we are in this parenting journey. Also, from time to time I’d like to go back (for my sake) and document things here. 

 

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