mamamamamama

There are times when I forget about the struggles in life and think that Jack is just a baby. Just the other day I was playing with Jack and it didn't even dawn on my that his life is a struggle. I actually forgot that he was pretty much 17 months old. I don't even know how to explain this in a way that you could possibly understand. I don't understand it. Then, all of the sudden, it hits me. BAM! Oh. Jack is different.

The most amazing thing has happened over the past couple of days. Jack has started to babble more and more. He now babbles 'ma mama mammmamama mama' here and there. It doesn't seem intentional at all yet, but he's got that sound down! What a pleasant accomplishment.

Of course, there are always struggles. We attended an annual Memorial Day lunch and fishing tournament. Jack was not happy, most of the time. He did have small bouts where he would play or just chill, for no more than 10 minutes at a time. Other than that, he screamed and screamed and screamed. We tried outside. nope. inside. nope. laying down. nope. sitting up. nope. walking around. nope. his chair. nope. we ended up coming home. He slept on the way home but was quickly peeved once again. I wish I know what got him going so we could eliminate the frustrations!

In case you didn't know

I just found out, from my dear hubby, that the email you receive, if you chose to join the blog in that manner, includes the entire post, and does not make you go to the blog to read the post.
I then discovered that you can click on the title of the post, In case you didn't know, which should be at the top of the email in the body portion, and it will take you to the blog. This is where you can make comments, if you choose to do so, among other things.

And, while I'm here, I guess I should share some recent events.
Jack had occupational therapy today. He did very well. We are working on sitting and leaning forward and to the side to reach for a toy. We are also working on Jack reaching for these toys without bracing himself with one arm on the floor.
Jack also had a bath, which AGAIN was quite an experience. I have yet to find a way to bathe Jack in a manner that he somewhat enjoys. Picture Jack screaming his brains out, while scratching his groin away, and throwing himself back, while trying to wash him. I'm not sure how we're supposed to take him to an indoor water park in July with other CFC families when Jack can't fathom the idea of sitting or laying in water.
Jack screamed and screamed. He also vomited up all of his food late last night. What a mess. I think I set his rate/hr on the feeding pump too high. He's been at 85ml's/hr for a week now, and for some reason I set him at 100ml's/hr Wednesday morning. He tolerated it just fine all day. Not last night. He did that cough/gag that we were sooooo used to in 2009. We all know what happens after that!

routine

It seems to me that taking Jack to appointments is just part of our routine. I even have an order in which I do things to get ready, getting and out of the van, attending the appointments, etc. . .
This evening was different! Jason attended the appointment along with Evelyn, and myself. It was a nice treat to have another adult with, especially when it comes to entertaining Evelyn.
Our little friend Jack finally hit the 16lb mark. 16lb 3.6oz to be exact! Phew. I was guestimating that he would be around 16lb 4oz. . .Should've bet on it!
His pediatrician wasn't too happy about the weight gain since the last appointment, but at least he's still going up.
His legs are getting chubby and you can see that double chin in the picture. . .now we need to gain some length too!

My Little Giggle Box

Jack laughed for the first time today. It was a full-blown giggle laugh! Granted, it only happened once, but what a blessing! Nope. That isn't a picture from the laughing hyena, but it's a lovely 'happy' picture of Jack. A genuine smile!

1, 2, 3, 4!

Jack had feeding therapy again this morning. Phew. I'll start with the trip to Koke Mill Medical Center. Jack screamed for 50 minutes straight! I figured his diaper was wet. Then I figured he pooped. Then I smelled the poop. Then he screamed and screamed so much his voice kept going out. It didn't stop! When we made it to the parking lot, I found a spot, left the van running, and quickly walked over the Jack's side to change him in the front seat. Oh boy was I in for a surprise!
Jack's leg, hand, arm, entire left side of his face, including his eye, ear, and hair, was covered with poop. Oh boy. Luckily, it didn't make it to the car seat! I wiped him down, changed his diaper and clothes, and then headed inside. Thanks to a close bathroom, Jack got a quick wash-down with some water and paper towel.

Feeding therapy went very well. Jack ate his favorite chocolate cereal. I was taught a new technique to prepare Jack for objecting moving towards his mouth. Count to 4, with each count touching, in order: wrist, inside of elbow, shoulder, mouth. The touch for the mouth can be anywhere near his mouth; cheek, chin, lip, jaw. Well, it seems to have worked!

Jason worked on it with Jack while I was making dinner. Jack had a spoon in his hand. Jason had the other spoon with baby food. 1, 2, 3, 4! Yeah! Well, by the time I got to the table, I took over. Jack saw me and he was finished with daddy! Typical. 1, 2, 3, 4! There came a point where Jack actually opened his mouth at count 3 or count 4!!!!!!!!!!!!!!!!!!!!!!! He was like a little birdie. The food came right back out, but he also ate some! Apples and Blueberries!

He grew out of the baby toys!

I just spent 1 1/2hrs taking apart and putting back together this toy. There was a ball, that didn't belong with the toy, stuck in the pink air volcano. Phew! I'm happy we're done with this. What a struggle to get it apart.

The screws just didn't want to come completely out, and I had to take out 20 screws!
Evelyn is screwing it back together as we speak. Go figure, once we get it back together, it doesn't work. Hopefully it's just the batteries. 4 D. Don't have any on hand. I plan on seeing if my niece would enjoy it, since Jack has lost interest.

The main reason why I'm fixing toys, and also cleaning up, is because Jack seems to have passed the baby toy, 0-6 months and 6-12 months, toy stage. Jack played with shape sorters and puzzles during Occupational Therapy on Thursday. He was deliberately trying to place the puzzle pieces and the  pieces in the holes of the shape sorter!

I still don't like her!

Do you remember when I told you that I didn't like the endocrinologist, but I would give her another try until we got in to the endocrinologist at St. Louis Children's Hospital?

I still don't like her.

We had the follow-up appointment for the Insulin-like Growth Factor test, the one where the result was the lowest possible, and then non-existent after the second test.
Long story short: I don't like her. She made me feel guilty that she had to work for two hours to figure out the needed nutrition for Jack. She also made it clear that Jack's syndrome is rare, none of her colleagues had ever heard of it, she had to print up a research article from 1996, she's never worked with a child with a feeding tube and on continuous feed, and the list goes on and on and on. . .

We have the option to have the next test performed, a Growth Hormone Stimulation Test. This is a test where Jack fasts for a set number of hours, and then he's injected with a solution of insulin or arginine, Through the IV, blood samples are then drawn at 30, 60, and 90 minutes.This is to see if the pituitary gland was stimulated by the insulin (or arginine) to produce expected levels of GH.

What I'm curious about is the arginine. . .Jack's mutations is BRAF with an amino acid switch of Arginine and Glutamine. . . He's already deficient! Anywho. . .I'm going to wait until we see the endocrinologist at St. Louis Children's Hospital. The one from Wednesday was rude to me, once again, made me to believe that I'm pushy with the doctors, that St. John's Children's Hospital is just as good as St. Louis Children's Hospital, etc. . . . .I understand that she is just honoring where she works, but. . .I'm not even going to get started on my rant. . .not worth it.

Jack screamed for almost 30 minutes at the restaurant last night. . .had a screaming fit over night. . .today. . .I need ear plugs!

I feel like such a failure as a stay-at-home mommy. There are these other mommies at school and they seem to have it all together. They get up really early and make all of the lunches for the day. They make breakfast for the family. They have a routine for housework, shopping, and even exercise. They take their kids to different activities. I don't get up early and make lunches. I don't get up early and make my family breakfast. I don't have a routine for housework and shopping, and Lord knows I don't have private exercise time. I do take Evelyn to Gymnastics, but that's it.
I just don't think I'm very good at this mommy thing.
Jack screamed this morning from 3:30am-7:00am with a small 20 minute nap in there, somewhere. I closed his door and attempted to sleep, not very well. I don't know why he was screaming. He wasn't jerking like the seizure. He was dry. He was full. It wasn't too hot or cool in his room. . .

wonderful magazine

So, the last post is from an internet magazine that I am subscribed to, Parenting Special Needs Magazine
I'm reading through the magazine right now and came across a wonderful website. My Child Without Limits I've already bookmarked it. I plan to read through the site for quite a while. The article that the link was found in is called What is Cerebal Palsy?: By United Cerebal Palsy. "No, I'm not saying that Jack has CP, but the article was very informative." Oh heck. Here's the article. What is Cerebal Palsy?
It's just that Jack fits many of the red flags. CP has never been mentioned by his neurologist. You see? This is what happens when I start learning. . .

Article on Respite Care

Parenting Special Needs Magazine

Where’s the Respite?

I don’t think there’s any anywhere…

This line runs through my head just about every weekend! I say it to myself or whoever’s around to hear it. I say it in the same voice as the elderly actress, Clara Peller, that said the famous line from the Wendy’s commercial. The difference is that she says “Where’s the BEEF?”. At the very end of the commercial, after asking repeatedly “ Where’s the Beef “ she says… “I don’t think there’s anybody back there!” So, I switched it to say…I don’t think there’s any anywhere. 

As parents of special needs children, where do we go to find respite? Where is it?  How to we go about getting it? My daughter is not as severe as some children. She is not housebound or in a wheelchair, her behavior issues are moderate. She can walk and talk and does toileting herself. In a lot of ways, others may say I “have it made” compared to what they have to go through. But, this is not about comparison to what others deal with verses what I may be dealing with. The bottom line is that as parents and primary caregivers to our children, we need a break. We need time away…..a respite! 

How do we go about getting R E S P I T E?  With that being said, my mind immediately breaks into the song sung by Aretha Franklin: R E S P E C T.  When I sing it in my head I replace the spelling to with R E S P I T E  , then on with the song...find out what it means to me. Oooh Just a little bit, Oooh just a little bit.

I decided I wanted to find out more about respite, was I entitled? How does one go about getting respite? I know I need it. I know my friends that have special needs children need it. But how do we go about getting it? I sometimes feel like a bad mother, or feel guilty if I say out loud (at the top of my lungs) I NEED A BREAK!  Is my sanity important? I set out to find the answers to these questions and much more. While doing my research, I stumbled across a wonderful website: Helpguide.org. Helpguide’s mission is to help people understand, prevent, and resolve many of life’s challenges. They did that and more by providing answers to all of my questions and much more. They said it better than I could ever put into words. So, I requested permission to reprint the following excerpts from their site.

What exactly is Respite Care?

Respite care is short-term or temporary care that helps families take a break away from the daily stresses, recharge and rejuvenate. Respite care is essential for your health and a vital part of the overall support that families need to care for their child with a disability.

Respite care basics

Seeking support and maintaining one’s own health are key to managing the caregiving years. Using respite care before you become exhausted, isolated, or overwhelmed is ideal, but just anticipating regular relief can become a lifesaver.

Respite can take many forms, but boils down to two basic ideas: sharing the responsibility for caregiving and getting support for yourself.  Finding the right balance requires persistence, patience, and preparation.

Planning your relief

Planning starts with analyzing needs…both yours and your loved one’s.  As a caregiver, is support what you need most? Some free time? Help with transportation? Keep track of your daily activities then make a list of the areas and times when you most need help.  Identifying your loved one’s requirements, abilities, and preferences will also help you find the right match. Are social activities primary? Need assistance with walking, eating or medications? Mental stimulation? Exercise? Answering these questions will help you determine which respite options to pursue.

Engaging family members in respite care

Family members and friends may be able to help out while you run an errand, take a break or even go on vacation.  However, just as the burden of caregiving is often more than one person can handle – it can also be a tough process for families to share.

Even the healthiest families can be severely stressed by ongoing care, and the division of labor is frequently lopsided.  You can encourage support and participation by:

• Talking openly and regularly.  Keep everyone up to date on your loved one’s needs and condition. Family members who don’t share the day-to-day caretaking experience may not fully appreciate the situation.
• Encouraging family members to evaluate what they can reasonably and honestly do.  Changing roles and varying resource levels can impact family involvement.  Welcome different viewpoints, accept limitations, and be willing to try alternate strategies.  Share your list of needs and take advantage of all offers to help.
• Recognizing your own feelings and discussing disproportionate tasks. Harboring resentment when you need more help can lead to your burnout and impaired health. Ask directly for concrete support and specific time commitments. Consider establishing an online calendar to organize relief and reconfirm schedules.
• Using technology to bridge distances. Try free video conferencing services to hold family meetings at times that work for everyone.  Create a web-based community to share updates and explore options.  Sites like carepages.com keep family and friends online and in touch.
• Exploring a family respite cooperative.  Consider trading respite services with other caregivers and their families.  Pooling resources can encourage involvement, reduce costs, and increase flexibility.
• Participating in support groups. Learning how other families cope can suggest new options and provide reassurance.  When siblings are unable or unwilling to share the load, peer support can be invaluable.

Paying for respite care

In today’s challenging economy, you may think respite services are unattainable.   However, thinking creatively can uncover valuable resources:

• Ask local retirement groups for volunteers to sit with your loved one while you take a walk, watch a movie, or complete an internet workshop.
• Trade services with other caregivers.  When a loved one is able to change locations for an afternoon, alternate weeks caring for both recipients at once.
• Contact area high school counselors.  College-bound students often need community service experience and are available afternoons and evenings.
• Look in to Traditional funding sources for respite care: Insurance, SSI, Medicaid, Foundation Grants, Nonprofit and Disability organizations and State Agencies.

Strategies for successful respite care: 6 Tips

Finding and implementing respite care sounds like a lot of work!  Relief and revitalization is not just important for you, it benefits all involved in the caregiving process.

Remembering the benefits and following these six tips can ease the process:

• Plan and schedule frequent breaks. Respite is not just a service-it is an outcome that requires regular relief.
• Use checklists to teach providers about your care recipient’s schedules, likes and dislikes.  Offer suggestions for handling behaviors.
• Make back-up plans.  Always keep a list of alternate providers and resources.  Unplanned emergencies should not prevent you from taking care of yourself.
• Evaluate often.  Observe your care recipient before and after respite sessions.  Ask for brief updates and more detailed reports regularly.
• Expect changes.  Respite care is a process that often requires fine-tuning. Anticipating and accepting changes in personnel or programs can keep you from becoming discouraged.
• Attend your support group regularly. Structured and informal groups allow you to meet others in situations much like yours. You can talk, vent, laugh, and exchange tips with people who understand. If you can’t easily leave home, online communities, message boards and forums can provide much-needed support.

I feel relieved! Just, knowing that it is O.K. to ask for R E S P I T E ! That it is an important part of my daughter’s care/support plan that needs to be included, implemented, and makes me feel better. Now the song that’s playing is in my head is “Celebrate Good Times, Come On!”

For more information, please refer to the following resources:

National Respite Locator Service

Respite Caregiver Checklist

Excerpts used with permission from Respite Care. Visit http://www.helpguide.org/elder/respite_care.htm to see the full article with links to related articles. © Helpguide.org. All rights reserved. This material is for information and support; not a substitute for professional advice.

6 straight hours of appointments

Where do I start:
Trip to St. Louis. Plan-renal ultrasound. urology clinic. EEG. lab.
Jack had his renal ultrasound at 10am. He also had a last minute pelvic x-ray, requested by the urologist at the last minute. I watched the images on the screen during the ultrasound. The dark circle was much smaller than recently seen. We get to the urology clinic. The doctor walks in and tells us that Jack's kidneys look great! I, of course am saying, "no. really? no. you're kidding!" His kidneys are only dilated a small amount. No sludge. No stones.No appointment for 6 months.!
Jack had his EEG around 12:30. His head was covered with probes. He screamed for about 40 minutes, as his head was first marked with green marker, then the marks were rubbed with this green gel stuff and the probes were stuck to that, which then followed with some gauze and special glue. After the mechanism was placed on Jack's head, and the tech checked to be sure that everything was running correctly, we did some tests (I held his eyes closed for 20 seconds and then a strobe light was run). We then turned off the lights and Jack got to take a much needed nap, which sadly was only 20 minutes. He DID NOT want to wake up. Boy was he peeved! The EEG didn't show any seizures during the test. The doctor is certain that Jack had a seizure. We can't medicate him because we don't know what type of seizure he had. All we can do right now is pray that Jack doesn't have another one. If he does, I am to video tape it and let the doctor know. Once they see it, they hope to be able to diagnose and medicate.

I have to get this off my back. This lady, whom I've never seen in my life, brings her son over to greet Jack. They look at each other. My mom asks the lady how old her son is. He's a chunker. She asks  us how old Jack is. Then she has the nerve to ask, "What's wrong with him?" OMG, I almost lost it! That was so rude and uncalled for. The nerve!

Oh, and my mom and I must be having some trouble with Weight Watchers, though we're both losing weight. We talked about food for 21/2 straight on the ride home!

Two steps forward, one step back.

I am 100% sure that Jack just had his first seizure. Here's what happened:
5:51am-6:06am Wednesday, May 12th, 2010
We're all sleeping. Jack wakes me up from his room screaming in a way I've never heard. He would scream at the top of his lungs, almost to where his voice was breaking up, and then stop. Scream and then stop. I ran into his bedroom. His entire body (not really including his head) would jerk all at one time, he'd scream that blood curling scream, and then it was quiet. When he screamed his eyes were open, he was looking around left and right, head turning, rubbing his eyes, but wouldn't look at me. I changed his diaper. Legs limp. During all of this (the jerks were occurring in 10-20 second intervals-Jack would scream for about 5 seconds after the jerk occurred, then silence, then a jerk again, followed by screams), I tried to get his attention, rub his body, touch his cheek. . .nothing. I picked him up, wondering if that would help and stop the jerks. Didn't help. He continued to jerk and scream in my arms. Not a jerk where I have trouble holding him, but enough where I want to hold him tight. I couldn't get him out of it. Around the 8 minute mark he lay his head on my cheek, as if it was "oh, mom. you're here". and then he jerked again, scream, "oh, mom. you're here". Once I had his attention I was able to lay him back in his crib. He continued to have some jerks and screams, but they weren't as often and weren't as bad. He's now resting. Seems like he could go back to sleep. He's rolled over to his side, which is a good sign that he's back to himself. I did have to change his diaper again once it was over. (I felt so helpless. I couldn't do anything to help him, but hold him and comfort him. I don't even know if he knew I was there).

I've already left a message for the pediatrician.
Two steps forward, once step back. . .

'Feeding?' Therapy

I took Jackson to feeding therapy this morning. We went in, discussed the wondrous things Jack has been doing with food since the last time she saw him (two weeks), and began. "We" began. Not Jack. He didn't eat anything. Nothing went in his mouth. . .at all. I brought the flip camcorder to record his success. Didn't get much success on tape, just Jack's reflection in the mirror, banging toys together. That's all he did. He did allow his therapist to touch his legs, hips, and face. She was able to do some massaging, for a very brief amount of time.

Here's my thought on why Jack wouldn't eat the food that I brought (Cheerios, Parent's Choice Little Puffs: Corn and Cheddar Cheese, and his blue sippy filled with grape juice). Last time we were there, only two weeks ago, Jack ate CoCo Puffs for 35 minutes. It's as simple as that. He won't take the red sippy because we started him with the blue sippy.

This is what feeding therapy is for!

I just got my mother's day gift

Jack just gave me my mother's day gift. I was so happy I wanted to cry. I could feel the tears pooling.

He clapped.

It's as simple as that. It's amazing how something so small, so simple, is such a BIG deal for me.

Thank you, Jack. It's the best Mother's Day gift you could have given me.

Check it out!

 

Check out that picture! Fruit Loops. His first time. Crunch Crunch Crunch.

Wanted nothing to do with the banana. Yes, those are Coco Puffs.

What a day, what a day. I took the poor kids all over town today. Good reasons, not bad. Got to pick out the linoleum and carpet for the house. That was fun. Not for Evelyn and Jack. Had a play date with a friend and her kids. That was fun. Not for Jack. Signed the disclosures for the new house. That was fun. NOT.

Check out that picture. No, really! Seriously! Can you believe it? I tried and tried to get Jason's attention at the dinner table. His jaw dropped when he realized that Jack had the sippy in his mouth. He didn't really drink anything from it, just chewed. He did let me give him 'sips' though. I started to eat some dinner and next thing I know, Jack had the cup up to his mouth.

Can't wait to see what he does tomorrow!

Nutrition Schmutrition

No, not really. I don't mean that. . .Jack had his 2nd appointment with his nutritionist today. It went very well. He's gained a nice amount of weight, right where she wanted him. His ratio for weight vs. length is not around 80%, much better than before. The kid has chub on his thighs. It's about time! We've raised the total amount of formula Jack will receive each day. This is great, and boy oh boy am I happy that I've been raising the rate the formula pumps through the tubes into Jack's belly. . .I'd be getting back to a 17 hour schedule otherwise. . .NO WAY! We're down to 12 hours now. I can actually give Jack breaks, real breaks. I can unhook him from the tubes and we can play and move around without worrying about pulling anything out, over, etc. . .Don't want that pole to fall over on my son now. you know that!

Jack tried a small amount of mint chocolate chip ice cream tonight. I think he liked it. He didn't open his mouth for more, but he smacked that mouth and really worked the flavor. "Mint Chocolate Chip is my favorite!" Not much interest in Cheerios since yesterday when he choked on one. I don't blame him. No interest in Gerber puffy stars either. He tried a Fruit Loop. He looked confused. No interest in the grape juice, again. . .or the stage 2 baby food. . .But he has been sleeping. . .when he isn't screaming. . .maybe we're in a transition or a growth spurt?

Tomorrow is another day

The house

Here's a picture of the house we'll be moving to. It reminds me of my grandparent's house. Wonderful memories.

God watches over all of the little children

Today was the pediatric cardiology appointment. I went into the appointment, with Evelyn, my mom, and Jack of course, planning on anything from great-bad, and everything in between. Well, the cardiologist was wonderful. Without getting into the deep conversation we had, as well as everything else: Jack had another echo and I'm happy that he did.

Jack's heart is fine! He has a tricuspid aortic valve. No regurgitation. No stenosis. No PFO. No ASD. The only hospital that gave the worrisome results was one that didn't specify in pediatric cardiology. Jack will still need to be followed every 6 months for now because of the enzyme deficiencies he has.

Thank you Lord.

Oh, and I got 'me time' this morning. It was nice! Thanks mom!
Oh, and the inspection on the house went very well.

This is a test, this is only a test.

Seriously, this is only a test. Just checking to see if the email subscription works. . .

Oh, and Jack had that nephrology appointment. Such a waste. Thought it would be. Quite the eventful ride though. Poop in his pants and all over his hands on the way there. . .toys on his head on the way back.

Over the interstate and through the fields

This week is going to be insane. Ok. Yah, it's already Tuesday and Monday wasn't too bad. . .but still.

Here's the chaos that shall arise, including Monday of course.
Monday-Developmental Therapy at home
Tuesday-visit from student nurse and Nephrologist at St. Louis Children's Hospital
Wednesday-Echo and Pediatric Cardiologist at St. John's Prairie Heart Institute
Thursday-Nutritionist at St. John's SIU School of Medicine
Monday-Feeding Therapy at Koke Mill
Tuesday-Physical Therapy at home
Wednesday-I have an appointment for myself for a change!
Thursday-Renal Ultrasound and Urologist at St. Louis Children's Hospital
Phew. . .it makes me tired just thinking about the travel.

Thanks mom for deciding to come down and travel with me. . .I was like, "I thought you were going to skip the first week and just come the next? Are you bored?" Mom, "yes."

Here are some silly pictures. Jack eating Cheerios. Sebastian pretending to be Evie. Jack at Six Flags.

sorting through

This evening I was getting some items ready for our moving sale, which keeps getting pushed back. I found the container FILLED with bottles and bottle nipples. For 30 minutes I sat and sorted through Dr. Browns, Soothie, Gerber 4oz, Gerber 8oz, and Evenflo bottles. This doesn't even include the 9 different types of nipples or hospital grade nipples I still have, which are individually wrapped.

I'm feeling down about the four months that Jack struggles with trying to eat. I'm feeling down about not being able to help him sooner. The memories are flooding in and I feel overwhelmed. I don't even know if I should sell the bottles. I tossed the used nipples. What if Jack decides to eat from a bottle one day? What if I need to try different bottles? What if I have another child one day? What if that baby has trouble eating from a bottle too? Should I keep these 'just in case'?

I can't just forget this. It makes me sad and I feel like I was helpless and I couldn't care for my child.

I should clean out and move on but I feel like I'm going to be on that television show, "hoarders"