Don't ever give up hope.

This will seem so foreign to some of you since all of our kids are different ages with different abilities but tonight my 8th grader attended his first PTA after school event.  No...not the science fair, the math competition or anything else a child with Asperger's/High functioning Autism is good at.  He is attending...at this very moment...a junior high skate night.  The same child who couldn't sit in church because everything was too loud...who kept his hands over his ears and would even scream if it got to much.  The same child who walked late has 8 wheels under those same feet. The same child who wouldn't go to the park because he wasn't really sure what would happen...is in a constantly changing environment skating round and round the ring.  (O.k.  he's not talking to anyone and he's not socializing with anyone...but that's another post.)  He's there...he's fitting in (kind of) and he doesn't look tense.  While I'm posting to you...I'm really posting for me.  Lorrie, don't ever give up hope.  

Girls...don't ever give up hope.

Exodus 14:14  The Lord will fight for you, you need only be still.

The Blessing

This is how this SEASONED MOM does much of her devotional time; searching videos that speak to me and that I feel will speak to others who have little time perhaps to search things on their own timing......I feel this video with the words on screen (makes things so easier to absorb) so applies to our lives with our special needs children. I know that the moms on this site are strong women of faith......to parent a child as ours requires that of us, rather we feel it all the time however, is a different story.......very dependent upon the day going on around us. I hope that the brief time it takes to view it in your busy, hectic, some crying days, that it brings comfort and peace, if only for a little while..........SOMETIME even when ...only for a little while, is all it takes moms, to be our medicine, our treatment, our hope, our faith, our survival, our peace, our everything to make it through and continue our race and help others see the beauty of the tulips.......love and hugs, Annette



"The Blessing" by John Waller 8:35pm
Source: www.youtube.com
Play Video
Praise and Worship Video for Generation V.O.T.


First time I remember hearing this, but it speaks to this week in our lives...the loss of a family member with loved ones into their mid 80s and their 90s attending her funeral services and burial; along with the newest Monts baby boy...two month old Quintin. Blessings over sorrows.......a life ending, a life starting. love and hugs, Annette

While I'm Waiting....for While We Are Waiting

While I'm Waiting
http://www.youtube.com/watch?v=Bb7TSGptd3Y
If this link comes through it is a beautiful video of a wonderful song entitled While I'm Waiting performed by John Waller. The song is heard on the movie FIREPROOF; however, this is a different video to the same exact song. It (the song and this particular video version) ministered to me in many ways as I listened to the lyrics and the music is so beautiful and moving. For my specific needs it reassured me that as we hope and pray for a miracle to pull together for a new type of residential setting for young adults like Clay we are to wait and worship and serve. So I post this more so in a manner of hearing WHILE WE'RE WAITING......not always peacefully and calmly perhaps as we should wait, but that we are to continue to worship and to serve Him while we wait for our answers as we put our trust in Him in all things. love and hugs, Annette :)

I'm feeling guilty and tired.

I'm feeling a little guilty.  I'm new to posting but I have three boys who have various issues.  My 13 year old is a High functioning autistic, my 10 year old is PDD-NOS...better known as ODD with a little (no correction) a lot of ADHD, anxiety and just plain boy thrown in.  My 5 year old is currently not diagnosed and I like it that way.  

The reason I'm feeling guilty is he attended his social skills graduation last night and I didn't have the greatest attitude.  After 10 years of being in ABA, DTT, natural environment, Floortime,...I can't even remember some therapies we've tried...  I left there a bit jaded.  He asked me what he was going to do next to help fix him...and I said, "We're done.  No more therapies, therapist, or going to therapy classes.  No more fighting with insurance, regional centers or anyone else.  I'm just done."

With the candidness of a 13 year old (and he's been speaking since he was 6 1/2) he said..."Don't you mean WE'RE done?"  That's why I feel guilty.  I don't know if he really doesn't need more therapy or I'm just tired of him being in some type of therapy.  I'm tired of people coming to my house, me driving to a clinic, doctor office, center or our last stint...UCLA.  I guess I'm just tired.

Question

I know I just posted yesterday, but I have a question.  For those of you familiar with walkers. We've been watching Reagan for awhile now and trying different things to get her to stand.  It seems like when she receives extra support she's more willing to stand and attempt walking.  Most of the time the support needs to be in her chest region.  Our PT suggested we add a snug seat to our pediatric walker.  She said that the Gait Trainer might be too cumbersome and that Reagan didn't need that much support, but that a Snug Seat would be her best bet.  Have any of you ever used these?  What are your thoughts?  

Btw, we got her DAFO's yesterday. She screamed the entire time we were putting them on and adjusting.  Eventually she got used to them and stop whimpering.  It sure made me feel bad but it was amazing the change in her leg tone with the DAFO's.  Craziness.  I'm heading to the store today to buy socks and shoes! Wish me luck! 

Good news, friends!

I wrote a tiny bit more on my family blog, but here is the snippet that makes me most excited:

Today at Jaylee's PTC:

Teacher :"Jaylee is doing awesome."

Me: "Yah?" (expecting the "but..." that always follows that)

Teacher: "Yes, she scored average on most everything.  She's right where she's supposed to be. She's even in the highest reading group."

Me: "Seriously?" (she whips out all the test sheets and shows me cause I really didn't believe it)

Teacher: "She is such a bright kid, she's a delight to have in class."

Yes, friends, Jaylee is officially tested "average."  To some this may not seem like a huge big deal, but to us it's freakin awesome.  Since Jaylee was born she's been behind, always below average and sometimes not even close to below average. It means that Jaylee is technically swinging with those her age. Woo woo.  These strides have even been huge in the last two months since we switched her to all-day kingergarten.  She was testing 7/25 in January and now is 23/25.  Holy cow, girl! I know there might still be road blocks, I'm not naive to think she's totally done in the learning disorder department, but this tiny victory in our lives has left me doing a major happy dance.  I NEVER thought I'd EVER hear that.  For a brief moment tonight my guilt has disappeared. I'm soooo proud of my little girl and how hard she's worked.  I'm grateful for the decisions we made and I'm sooo thankful for all the teachers and therapists who have helped her along the way. 

Praying For Answers

Hi Moms, it is that 'older lady' walking through the tulips again. I just want you to know that I think of you all and that by sharing this blog you will gain strength to fight your battles. I am praising that you have this outlet to vent and share info and suggestions all in common and unconditional love for the other moms trying to get through a day just like another mom. Your battles are difficult and discouraging. Reality is your battles will always be with you in some manner regardless how far into the tulip garden you tiptoe. Reality is it never really leaves a mom who has landed in this land of confusion and extreme fatigue. It has been a rough couple of weeks too for this 'seasoned' mom to Clay......hubby out of town, sleepless nights because I am afraid I'll miss hearing something that needs attending, difficult to find and schedule care attendants, diapering a 24 year old man, and believe me, he is a man.........(this however helps me understand certain aspects of a male and certain other things), a black eye today from a very rapid, intense, bony knee during last night's diaper change before lights out..........yes I cried, I cried very hard......once I made it out of his room and out of his hearing~seeing because it was not his fault, it was not my fault, it was simply our ongoing reality. I have a vision for cutting edge residential programs for highly cognitive yet totally dependent physically challenged young adults pushed out of school at age 21. Coming up on three years at home now basically 24/7. Life is difficult. Life feels unfair. I get angry. I throw my pity parties too. But Darling Moms, I pray for answers. Answers for your beautiful young children facing difficult stumbling blocks. Answers for my grown son still dependent on his parents care. Answers for families in similar shoes walking similar paths. I lost an aunt on Sunday evening. Her husband is an older brother of my father. He has dementia and has been her shadow for years........her devotion and love of him was totally and completely unconditional. We don't have answers for his care provision now. He will be 92 in early April. She died on his older brother's 94 birthday. Another brother will be 90 in June and my dad 88 if they make it to those dates. They all survived and fought horrible evil during WWII.......but they are still here, still supporting each other, still close and concerned and loving. They are a family that has weathered many crippling storms in their lives. You are all family. You are all part of my heart family. We are strong though we feel weak. We are strong though we often weep tears constantly. We are believers. We are caregivers. We are entrusted to special children for special purposes not yet revealed and understood. But I give you my word from way across the states to a little town in South Carolina, I pray for your answers. I pray for your families. I pray for your healings. I pray for your progress and your successes. I love you because you are my younger sisters. I wish you blessings and peaceful moments. I wish for you treasures and happy memories...........good things and good times. I send you love and hugs and I hope some small portion of reassurances. I pray for your answers.

I am sad

I am sad.

Since this last surgery I have a different kid. He is mean and opinionated and ornery. He is sad so much more.

His muscle tone has increased and he can't walk as well. In fact he would prefer to crawl.

I am sick to my tummy.

I can't stop crying.

Who do I take him to? Where do I go? How do I help him? This didn't happen last time

We have an appointment in the morning for a follow up scan. I have an appointment with his braces guy to see if he can help me get in to on of the rehab docs.

I am frustrated.

I feel VERY alone.

The "others" comments are bothering me

I am sad.

Feeding Issues Continue

We had cereal for breakfast but it took Marshall FOREVER to eat his little bit. I ended up feeding him most of it. Thankfully, he wanted a snack at church so I gave him a Sweet & Salty Peanut Bar. Those are SOOO yummy!

Then, this afternoon, we gave Marshall 1/4 cup of Chili, which he loves, and a few other things for lunch. He ate his crackers (the crunchy part of his meal), and a few bites of his fruit leather (the fruit choice), but STRUGGLED to eat the Chili. He just wouldn't do it. He played and talked and played and talked but never wanted to eat. He had one bite in 20 minutes. So finally, out of desperation, I started feeding him. The SLP told me I should because he has a significant feeding delay. First, I told him to eat four more bites (which he eventually did) but then he wanted to be done. So I fed him a few more bites but he just would not finish. I finally gave up but that means he only ate MAYBE 1/8 cup of Chili. That can't be enough to keep weight on this boy!

Dinner started with a battle. He complained and complained about the smell (we had Beef Stroganoff), said it was yucky before he tasted it at all. When my husband put Soy Sauce on Marshall's food he said it was yummy. Still, he wasn't eating so I decided to let my husband feed him this time because I already had a turn and I had been done eating for about 10 min.
I was only gone for a few min. when I hear coughing in the kitchen. My husband yelled something so I went in to see what was going on. There was Marshall throwing up in the trash can. At least he puked in there and not all over his booster seat (which I still can't get all the way clean). My husband was FRUSTRATED and earlier had sent Marshall to bed as a punishment for not eating. I told him we can't do that!! My husband's punishment is always send them to bed but I don't agree with that. Anyway, so my husband, in frustration said, "We might as well take him and let them put a G-Tube in him." Marshall is not that bad. Yes, he has major feeding issues and yes we are frustrated and SICK OF FEEDING ISSUES, but that doesn't mean a G-Tube is the answer. He is still about 34 lbs which is really not bad for a four year old. Unfortunately, the SLP doesn't have appointments available this week so we have to wait a week. She's only in on Thursdays but I will leave her a message and beg her to call us and give us SOME clue as to how to help this boy!! We're at a complete loss.

Sleeping is still a problem but he's had a few more good nights. Sadly, he looks so tired all the time. Last night he slept in our room on his little bed, and cried out so much in his sleep. I wish he could have peaceful, restful sleep. Maybe someday.

Ellie's Belly

Hello, my name is Abby, This is my first post, but I have been an avid reader of this blog for a while now. I have a almost 3 year old named Ellie, she was born missing 90% of her small bowl and 30% of her large bowel due to Jejunal Atrisia. What we have been told is the probably what happened is during her 11th week in utero, her bowel twisted as it moved into the abdominal cavity. This bowel died and was re-absorbed. This means when she was born she had 30 cm of small bowel coming down from her stomach that ended in a very dilated dead end. Then what was left of her colon that was coming up from the bottom was very skinny, called a micro colon.

All the organs practice and learn how to work while in utero, but because Ellie’s bowels were not connected they never learned how to do what they were supposed to do. We spent the first 8 months of Ellie’s life in the hospital trying to get her bowels to do what bowel are supposed to do.. I quit my job, we sold our house and we moved from Connecticut to Massachusetts to be closer to Children’s Hospital Boston and our family. We had no idea that this was coming and our lives have never been the same since that night when Ellie was 18 hours old, when the surgeon walked in and explained what she found in Ellie’s belly. But in a way our lives have never been better. We love where we live, the path our lives have taken and love our amazing daughter.

Ellie has an ostomy, a G-tube and a Central IV line (CVL). Ellie is on tube feeds and was on Total Parental Nutrition for the first 2 and half years of her life. The TPN should have damaged her liver beyond repair during those two and a half years but we were lucky enough to get on the new experimental lipid called Omegaven. It is one of the main things we credit for saving her life. She is still on IV hydration fluid every night.

Right now the most important thing is getting her to eat and eat enough. If she eats enough then we can stay off of TPN. We have had Feeding Therapist coming to our house ever since we go home. Now she does eat by mouth but it is slow and we have to remind her to chew. Meals are long and sometimes painful. Even though she does eat she is still on he enteral pump for 16 hours a day.

Now all the being said, if you ran into us on the street you would have no idea that Ellie was in any way different. She is a riot, she runs everywhere and will start up a conversation with just about anyone. She is in Gymnastics, Ballet/tap, and just recently a sports class. She is very active and very social. But if you pulled up her shirt and took a look at her belly and chest then you would know the truth.

We try our best to make sure she gets treated the same and gets all the same experiences that all the other kids get. The only thing she can't really do is swim. Due to her central line, we have to be very careful. She can only swim in very clean ocean water or a swimming pool that we know is really clean. She has been in the ocean twice, my sisters swimming pool twice and she has only had 1 real bath ever in her whole life. The thing we fear is a central line infection. We have been able to go two and half years without one so far, and would like to keep it that way.

So now I know more about the human GI system than I should; I can and have setup TPN by candle light, have spent 264 days in the hospital with Ellie so far, have met some amazingly strong kids, parents and adults and know how to scare the crap out of a new resident at the hospital.

I love this blog and others like it. They have been amazingly helpful and a great source of support, I look forward to getting to know you all better. Sorry this is so long!

Church...Am I ready for this again?

Tomorrow is Sunday.  When I was single without children it was one of  my favorite days ever. Time to relax, feel the Spirit, feel peace and read.  I get up extra early some mornings just to be alone with the quietness of the house and feel that way again.  Today has not been our day.  I had a pretty disappointing conversation with someone about our kids in Primary.  My daughter's teacher happened to mention that my son was having a really hard time sitting still and being reverent.  She said that my oldest daughter was trying desperately to help him and was pulling up a chair for him to come sit by her.  WHY DID NO ONE TELL US? 

First you should know we have a five year old who has anxiety and sensory issues and is borderline for Asperger's.  She is our mommy figure.  Her brother is 15 months younger and also has anxiety, Asperger's, sensory processing disorder and we are looking into ADHD.  Then we have our second youngest who is 3 and has separation anxiety.  They all sit very close to each other as they are one year apart exactly in Primary classes.  So...I imagine it can be a handful since they have only really ever played with each other and not very many neighborhood kids.  I got hurt over and over again trying to have play dates with their peers.  Moms called to say we should "take a break playing with each other", my children got violent or mean and well....now we just stick together for the most part.  

But back to my story (I have ADD) I imagine my son who covers his ears during sacrament because the music is too loud, kicks pinches and slaps me across the face when he gets overwhelmed there.  We go out in the hall to jump up and down, spin in circle, run around outside or just play in the bathroom water sometimes. 

I am not surprised that he can't sit still in Primary. He and his sisters complain every week that they hate church and don't want to go. It breaks my heart. I  imagine they feel just as stressed and pressured as we do about making it through the three hours in one piece.  I want them to go every week, I think it is vital to our long term happiness.  But I also want them to feel a peace there.  

So I asked this sister if she thought it would be possible to get a special helper called in Primary to help the children who need help.  There are several special needs/high functioning  autistic kids in our ward.  her response was that they don't want to single anyone out. They can get special services at school but they won't do that at church.  I asked if my kids could bring a picture of the family to help with the separation or a fidget toy for the siting still.  Nope.  It's a distraction to the other children.

  I told her about the First Presidency's message on autistic children and making arrangements for them and any other disability at church.  I felt like a nut after talking to her and getting so emotional over some of the comments made about how out of control some of the kids (who are special needs) can be.  

So I came home and balled.  Does anyone else have issues with this? How do you make Sundays enjoyable?  How do you handle Primary? 

Needless to say I called her back when I was more calm and I think she understood a little better. I also called the bishop's counselor over Primary after telling my husband what had happened. So I am hoping progress will be made.  

Why do I still feel like I ruffled feathers and did something outlandish in speaking up?  Why do I feel like people see me as overbearing or a helicopter mom. People have told me they think our kids are normal and we just call them special needs...ummmm, okay?

I chucked the phone against the wall yesterday.

Yes, yes I did.  Me and my cute family are moving to Georgia in June and I started calling Georiga's State Special Ed and State School Board programs about two weeks ago.  For two weeks I've been bounced around from person to person, transferred here, there and everywhere.  I FEEL like I'm getting closer to that specific person I'm supposedly supposed to talk to... but I am highly discouraged.  I'm trying to figure out the best area in Atlanta, near Emory's campus, to move with my two cute kids.  They need special help.  Wouldn't you think SOMEONE in the state of Georgia would say "Oh, okay, you're looking at the North Atlanta area?  I would reccomend _______"  NOO.  I had one lady tell me she wasn't at "liberty to divulge that information" so I started asking her therapist to client ratios, the types of therapies available in certain counties and she quickly sent me to yet another persons voicemail.  Aaaaaargh. 

I finally got a name to the Special Education Director for the state AND her personal line.  (I'm such a bully, I know) so I'm calling on Monday hoping she can at least give me some information that will help us decide which suburb to move into.

I did find out, unfortunately, that even with open IEP's and IFSP's my girls will have to be completely re-tested and their therapy services determined when we get there. I'm not sure what their guidelines are so I'm praying they will qualify and we won't have to turn to private therapy.  Then, I called up my local school district to schedule testing for Jaylee for her IEP meeting and they told me her file was missing... and has been missing for THREE. MONTHS. For. the. love. Ooookay?  Can we still update her IEP then?  "I'm not sure... let me transfer you..."

So, yes, after THAT phone call which was piggy backing the two weeks of frustrating calls, I threw my phone against the wall.  If my daughter wasn't standing there I might have cursed. Instead I stomped around like a 2 year old and told my daughter I was dancing.  :) 

Feeding Therapy And How My Son Slipped Through The Cracks

I fought like crazy for many years!! I told people there's something not quite right with my precious child. Sometimes being poor really stinks. We're on Medicaid and I'm telling you, if the government goes ahead with Universal Healthcare the way they want to, we're all in BIG TROUBLE!

But enough about politics. Yesterday was a HUGE eye opener at Feeding Therapy. We now have 4 new diagnoses since starting with this therapist. He has dysphagia and hypotonia, oral motor delay, and fine motor delay. Interesting, isn't it, that nobody found this out before?

Yesterday, Marshall was his normal self for the SLP. He tried every trick in the book to not have to eat. His SLP was floored. He had made such awesome progress so quickly that when he was refusing to eat, she was so surprised. As she worked with him yesterday, she noticed he has a hard time with chewing. It was the first time anyone has said that to me. I don't know why it takes him 2 minutes to chew and swallow a bite and only when he has a drink will he swallow. The therapist put on gloves and got a piece of bubble gum. She rolled it out a bit and had him bite on it. She demonstrated proper biting but he wouldn't (or couldn't) do it. He would do a bunch of quick little bites but never did anything to the gum. She put it inbetween his teeth in the back and had him do 5 chews. After a couple times of this, he said, "My tummy is full". LIGHT ON FOR MOMMY!!! He says hi tummy is full because it's too exhausting to keep chewing and he doesn't want to do it. THAT is why he would much rather drink his meals. That's when she said he has an oral motor delay.

So, this week, we have to work on his chewing. We have to use bubble gum and have him practice biting properly, and then also have him bite on chewy tubes. At every meal he should eat a hard munchable, 1-2 soft cubes, and one hard meltable. Those are the textures. Now with those textures in mind, he needs a protien, a starch, and a fruit or veggie at every meal. That's a lot to think about. Especially with both my kids losing weight now because they don't want to eat. I'm going to buy heavy whipping cream today, among other things, to help them gain weight.

RSV

Marshall has RSV so we've been busy around here. We think he's on his way up but he has been coughing a ton!!! Well, the doctor's nurse said we can go to the Draper Temple Open House tomorrow and that he shouldn't be contagious but I took him for a walk around the block and I had to carry him the last half of the block because he was coughing so hard he couldn't walk. He doesn't slow down at all!! He still jumps everywhere and I think that wears him out too. Poor boy needs to get well.

Do you think it's RSV or the Flu? How would I know? Would you take him to places where he will be around other kids? Would you let him go to school Friday? I have the Cub Scouts Blue & Gold Banquet that I'm in charge of on Friday and I don't know what to do with him if he can't go!!!


He said such funny things to me today. Check out my personal blog, The Bucklein Bunch

Oh, and by the way, the eating issues are NOT getting better. Just like Marshall ALWAYS does, he got better for a while and now he's refusing to eat. He doesn't like Pediasure anymore and he threw up the other night because he didn't want to eat. I think this is going to take a lot more work than his therapist thinks!! He always ALWAYS ALWAYS cycles through different patterns of behavior. Gotta love it. No, I don't love it but I love him!

Thanks for the prayers

Ty is OK. Its nice to have him back. He is having a burst of more babbling and today signed sleep and asked for his blanket. ( Pointed) He then pointed to the store we were at and signed food. I was so excited. I KNEW he was getting it.... DARN HEAD!!!

I have a dilemna too.

I also have a situation that I'd like you all to weigh in on. It's not one of the more serious issues that we face, but an issue none the less.

MK's 4th birthday is a month away. She has never had a party with 'friends'. Ever since she went to her cousin's Princess party last month, she has been wanting one of her own. That's not the problem. Of course I'll throw her a princess party for her birthday! Here's where it gets all complicated for me though.....
I have a short guest list. Her two cousins, and a little girl from our old neighborhood. They are on the list because they know MK and she knows them, and they all love each other. I have thought about inviting some of the little girls from church, but I don't want them to come just because they're being nice to 'the little handicapped girl' - does that make sense? I don't mind having a small guest list. I just wonder if should invite neighborhood kids to help them get more used to her, and teach them that she's just like them, or if I should keep it to those who truly love her and treat her normally already. What do you all think?
The second issue for me is what to do at the party. If it's MK's party, I want to plan things that she can DO herself, not just watch the other kids do. But if I do that, will it be too boring for the other kids? I feel like I have to take our guests into consideration too.
Any opinions? Or suggestions on things to do at a Princess Tea Party?

What do you do?

I am in a situation that I wish I could figure out on my own, but hey Im a middle child and desition making has always been difficult. My coping method has always been to take a poll. So I have come to all of you with this heavyness that I carry.

When a doctoer tells you that he/she does not know what else to do for your child what do you do? (besides cry) It's more complicated... the're only 3 of these specialists in Utah. The other 2 are married and from what Ive heard not that great. I know I am taking Jonah to the Best here, but there is no answer for us. Do I go out of state? (I've had to quit my job to take on my family so we stuggle month to month as it is.) I just don't know what to do. If you have any answers please share. We are desperate.

Emergency Surgery for Tyler

I wrote about it at my blog. I am to tired tonight to retype it. Please head over to look. The basics:

Has a shunt. Revision done less than six months ago. Started throwing up yesterday. Took him in and his tubing was broken.

I have a cold and I am PRAYING that no one gets a fever espcially him

http://micropremie-miracle.blogspot.com

What do you say?

I am just curious about some of the comments you guys get on a regular basis, and how you respond.

First of all, we all get those well-meaning, but not so good comments people make. I have actually gotten creative and comfortable (for the most part) with my responses to those. What I am having a hard time with is the nice comments.

I am sure you all have feelings along the same lines.... overwhelmed, frustrated, angry, sad, and so on about the things that go on in your life as well as your kids. We all feel this way for whatever reason it is for each of us. I have a hard time finding a response when Josh's therapists or Dr's say how good of a job I am doing or that I am super woman or something along those lines. Some days I feel like that couldn't be further from the truth, and some days I feel like I am super woman with all I have done that day. But I have a hard time accepting the compliments since there is such a long road still to go. I feel so uncomfortable when someone tells me how wonderful it is that I put such time and effort into my kids. Because in my mind I am thinking that every mom puts all her time and effort into her kids. I am no different.

I guess I am just wondering if any of you have had the same feelings and what do you say to someone you don't know well who makes a comment on what a wonderful mom you are to do so much for a special needs child? I know alot of it does come down to accepting the compliments and that is hard for me (like accepting help is hard too) and I know I am not the only one who deals with this. So what do you say in that situation?

A VALUABLE RESOURCE!!!

Hi moms......It hit me I need to post a resource to you all.......you are all mainly out west, but this is a company in North Carolina with very valuable resource tools.....we have worked with them/ done business with them for years! Many different resources......so be sure to check out their web site for incredible information......browse through some of the items and sometimes when looking something will 'click' that it might be a lead to help your child........that is how I have found many tools.....just browsing catalogues and now web sites for anything I don't know about or have not seen.......see if it takes you to something that offers hope to help you problem solve your very unique, special circumstances for your children.....I only have high accolades for this company! Praying I can help some of you.......the web did not exist when I was in the middle of storms....I was very isolated, very all alone.....there was no one. I just praise God that you all have each other and this resource of support and knowledge and love! This is the site:
http://www.gokeytech.com/ and another site........www.ablenetinc.com

events of today

Jonah

It's already been a day and it's only 1:00pm. We got up early this morning for Jonah's apt. It was a clinic up at PCMC that will focus on Jonah's eating and over all weight. We have been waiting to go to this clinic for over 4 months. It is called the FUN clinic, but to my surprise it wasn't fun at all. (Follow-Up Nutrition) I imagined a big room with lots of toys and very spacious. Maybe a few tables so that the parents could sit and chat with the doctors...Nope, all wrong. When we arrived I was given a stack of papers to fill out (really? All of his procedures and hospitalization have been done here why can't they do some research?) I had about five minutes before they called me back to the room. I told the RNA I was not finished and she said to just finish it up in the room. The room was about the width of a pantry, but long. they're were no toys. Just a regular examination table and a sink. Very boring! the social worker came in first and chatted about our families well being through all of the events this past year and asked lots of questions about Jonah's medical history (a story that I am so sick of retelling) while she was talking to me another woman came in and was later introduced to me as the nutritionist. The nutritionist was there for the remaining of the apt. She had great knowledge of what would work best for Jonah, how many calories he needed and wrote up a meal plan. The doctor assisted her with this and I feel so much better about the whole thing. The concern is that Jonah is overweight for his height. He is 26in and weighing 19.4 lbs His BMI is 97% this is causing the gross motor delays. He is short due to the long period of time on steroids. Today I learned the steroids are also causing him to want to always eat. The Dr. informed me that the steroids are causing a whopping 80% of the problems...hence, he needs the steroids to breath. I'm tired and worn down by all of this, half the time I can't even register it. We will go back to the not so fun FUN clinic in April to see where we are.
After the Not so fun, FUN Clinic Jonah and I went down the hall to register him for some labs. We went in sat down waiting for his name to be called. A little boy and his mom walked in and sat across from us, we got to talking and she told me her little guy is also 15 months. He was walking and talking, just being a toddler. Once again it was thrown in my face that my baby, my son, my Jonah was not "normal." I can't even explain that feeling. it's like being the last person picked on the team, feeling. It makes my heart just ache. I just want to yell "It's not his fault." I know the other mom felt bad for Jonah which almost makes the situation more uncomfortable. Jonah's name was finally called and we left the waiting room.
writing this I have had to take a couple moments just to cry. I have become such an emotional person and quite the "mama bear."

The Seasoned Mom in the Tulips

Looks like I am going to be the 'older, mentoring' mama here.....It is an honor and a blessings. I'm going to enjoy popping in on occasion.....visiting this lovely garden. My son......24 on May 19 is still with us.......full of mischief.....high functioning intellectually, mentally but 'ravaged' by severe cerebral palsy. It has been a long journey......roller coaster ride in Holland....and we will likely still have to get back on it time to time. However, with time you moms will begin to run the race and find yourselves closer and closer to victories........small ones, middle sized ones, large ones, and sometimes even HUGE ones..........they come and they go..........but enjoy the good moments here.......we are all very blessed........and sometimes yes, I think we are chosen.......sometimes I wonder chosen for what......but, chosen for something big for God who brought all of us here to this place for a beautiful purpose, a beautiful language, a beautiful lesson in life other moms will not comprehend.....we do and we will.....enjoy the tulips, the windmills, the clogs.......all that is the beautiful destination on your journeys, individually and shared between you..........love, hugs, prayers, Annette

DAFO's and Pediatric Walker

It's official.  These two things are going to be a permanent fixture in our home.  We've had the walker for two months now, but our PT told us today she would be surprised if Reagan was going to be able to be without the walker a year from now.  So now starts the process of trying to get our insurance to help cover the walker. 

Reagan was measured for her DAFO's today.  It was bittersweet.  I cried after our PT left.  I'm grateful for these devices, I'm grateful for a PT.  I know the braces will help her, but it's just another one of those little things that remind me our path is slightly different than others.  Hence the crying.  

We just ordered them and since we're paying out of pocket they should be here by the end of next week.  I would love to hear anything about DAFO's...  other than what my PT has told me I have no clue how to work them.  Do they wear them all day and all night?  Or just in the daytime? How long did it take your child to get adjusted to the extra weight?  Right now I have Reagan shoeless because she balances easier and is more willing to walk that way.  It sounds like the DAFO's work best with shoes on.  Right?   For those of you who have DAFO's, what has your experience been?  I know we'll have to buy bigger shoes.  Any suggestions? I don't even know how to put them on her.  Help!

Time outs = worse for moms

Oh how hard this is! It is so hard for me to send him to his chair. So hard to see him so sad. Oh please let his naughty stuff pass fast!

A Day with Clay

The following was e-mailed to me for posting by our friend Annette. (warning: you may want to get a box of tissues. Especially for the second half.)

A Day With Clay

This is a different type of post. Some are curious about the extent of Clay's care and what it involves. So regardless it is difficult to share some of this, I do in the event it helps educate why it is so crucial that families find solutions to help cope with the tremendous responsibilities. A day with Clay will involve: diapering including and evening bowel regimen, (Clay is large and not capable of standing or sitting so toileting is not a workable option) Gastrostomy feeding...he has a feeding button that stays in his lower left abdomen that resembles a plug on a blow up beach ball. To this we attach a length of tubing and a large syringe which the liquid nutrition is poured into. This is done four or so times daily. He requires bed baths daily and his daddy will shower him in a special shower chair a couple of times a week. His teeth are a big issue because he does not eat so he does not get the abrasive natural cleaning of food against his tooth enamel as he chews. He has a lot of sinus drainage and a tremendous gag reflex. His teeth are misshaped and almost always coated by very hard and thick yellow plaque. It is the only thing that detracts from his incredible good looks and great huge smile. Occasionally we have to go into Richland Hospital as outpatient to have his teeth examined and cleaned in a Dental Operating Room. This is never fun but does become necessary with time. He has to be dressed. He has a queen waterbed in his room which is totally enclosed for his safety...Clay moves around all the time with movement he has little control over, thus the need for enclosure. We have a sling patient lift which is operable from the ceiling from over his bed through his doorway and down the short hallway to the recliner he sits in at home. He straddles the recliner sideways and puts his head on the right arm rest with his legs hanging off the left side. When he is in his recliner he is on his lap top computer communicating and having fun. He accesses it with a switch that is placed by his face and the computer screen scans and he clicks the switch with his face/head to select as we would use a mouse on a screen to move across areas. When he tires of the recliner he will normally go back to his bed or perhaps we are going out and we will put him into his power wheelchair. The photo of Clay (which I-Tiptoe Mama-did not receive) does not show his chest straps that are normally in place to keep his shoulders back and his upper body stable. His arms are both strapped down on his arm plates. He has a lap belt and his feet are strapped. In addition he has a knee block that keeps his knees in proper position thereby keeping his trunk in proper and stable position in the chair seat. He has to be in his wheelchair to be transported at all times. We have a large van adapted with a lowered floor, a high top and a wheelchair lift to get him into and out of the van. Sometimes he likes to eat small portions of foods that do not require a lot of chewing. He often likes to drink iced tea and Coke and even sometimes he will ask for coffee and he is the only one in this household that drinks it! Most nights he is awake for large portions at a time. Sometimes he is just 'chatting' and laughing and dreaming while awake...Other times that we find difficult are when he is having muscle spasms and/or is physically sick, most often with sinus related things that make the gag response super sensitive and often occur continually during the night. Clay handles all these things better than you could imagine. He handles these things much better than his family that takes care of him. His mental -intellectual state is normal for his instructional time and life experience. He verbalizes some things, but not nearly able to verbalize as we wish. He relies on his computer much of the time to really express himself to others. We have learned a lot of what he is saying or trying to say verbally as well as his expressions. More often than not, Clay has a huge smile on his face and he is extremely happy to be who he is. Maybe once a month or so, he will have a true 'melt-down' that will involve tremendous sobbing. It runs it's course and then more times than not, he is over it. Think about not being able to vent your frustrations except in this manner! We try really hard not to become frustrated with him when these moments occur. So that is a day with Clay. If anyone has questions please feel free to ask them. We are trying to find resolutions for individuals like Clay who require so much total care. Services that would provide outside interactions with his peers and solutions to address respite concerns. In August Fred and I celebrated our 28 anniversary and got away for two nights. It had been over five years since we had been alone without Clay for a night. (a few individual time outs with work or friends, but not away or even here as just Fred and Annette). Finding solutions to care beyond several hours at a time is very difficult and takes a toll upon his parents freedoms to get away and renew their couple time. Often if you see us we are indeed a threesome. Not always a hindrance...just sometimes you need to be a couple without your child; especially on who is twenty-two and requires constant care. I hope I expressed this as I want it expressed. Perhaps the better term would be as I hope it is received. I do not want our family to be pitied in any way, however empathy is always accepted. We do ask that those who read this posting will lift some extra prayer intercessions on our behalf. He is calling me from his room....guess I need to see what he needs.....;)
Posted by Annette Monts Falls at 10/04/2007 03:31:00 PM

Clay's Witness - Jeremiah 29:11

"For I know the plans I have for you, "declares the LORD, "plans to prosper you and not to harm you, plans to give you hope and a future." Jeremiah 29:11

Written a few days before Easter Sunday, March 31, 2002 for those who requested to know some of Clay's witness...
Clay was born May 19, 1985 in Boulder, Colorado. He was 36 weeks and weighed 6 pounds and 15 ounces. Mom and Clay were in extreme danger to impending uterine rupture and taken for Mom's third emergency C-section. For some reason, immediately after birth, Clay's lung ruptured. This set up a horrific chain of reactions that would take his life from him, time and time again, yet God had other plans and always sent him back to Mom and Dad and those of you who have been blessed to meet Clay on this earth's journey. Clay was the third son born to Fred and Annette in four years; firstborn May 21, 1981, a son Taylor born too prematurely, bore witness with a tiny footprint and lived a short number of hours in Tulsa Oklahoma before blossoming wings and taking flight to dance with moonbeams and stars. (God nudged us to bury him in Chapin, SC which we did, and we had no idea that we would be home to stay in summer 1986. Brandon, born March 7, 1982 by a C-section only 9.5 months after Taylor, spent his first month in the same NICU in Tulsa, then made incredible strides within three months and has never stopped growing since...now 20 and 6'3". He weighed 5lbs. 15oz. at birth. Then came Clay. Clay was transferred with much difficulty by ambulance to Denver Children's Hospital hours after he was born. It is a miracle he survived the transport teams arrival to Boulder, much more that he lived during transport. He was extremely critical and not at all expected to survive. (Transport by helicopter would have been nearly immediate, but he would not have survived the vibration of flight...however, they did fly a neonatologist to Boulder to assist in his care by ambulance. Mom first traveled to Denver on hospital pass on that Tuesday morning, May 21. It was about 36 hours after delivery and the four year anniversary of Taylor. I pleaded with Clay to live for his mama, his daddy, and his big brother Brandon. Somehow Clay clung to life by a very tiny, extremely fragile thread. At five days, Clay was scheduled for lung surgery, but before the appointed time of surgery, he died in front of his mama. I had just expressed my breast milk for him and was giving it to the nurse when this happened before my eyes. He had 7 chest tubes in his newborn body, and it took six or more nurses and doctors to rush him and all the accompanying life supports into surgery. We were told the surgeon actually opened him in the elevator making the incision across his shoulder blade even before making it i not the operating room. I was alone as Fred and Brandon had gone to Denver airport to pick up Mom Falls who had flown in from Rock Hill to help with Brandon and give us support. I can vividly remember the on my knees moment with God, not knowing if I should let Clay go be with Taylor or beg him to stay with us. I told God I would accept His decision. These were among the first Clay moments that he should never have revived; God had other plans. The medical staff told us time after time that we would be losing Clay before a certain time would pass. After 4 months in Denver, Clay was transferred back to Boulder Community Hospital. He began to nurse, even after all that time on a vent, and Fred lost his job. On the day Clay came home, Fred was in Oklahoma City, on a job interview and I brought Clay home by myself because at least it was something special to celebrate in the event the job fell through. Hours after getting him home and just as Fred was coming in from OKC, we rushed Clay back to Boulder Community. He was having seizures. Why? On the card with the meds listed, he was taking Lasix and was supposed to receive .5cc. The decimal point was nondescript and not next to the 5...Mom gave him 5cc. This high dose of Lasix caused his other medication levels to soar out of control. Another ambulance ride, full code, back to Denver. At some point, Fred and I got ahead of the ambulance in downtown Denver, morning rush hour, and no one would pull over for the ambulance we knew was carrying our child. It was moment of total desperation!!! Again, God had other plans for Clay and our family. Would you believe a pediatric neurologist told mom by phone after this incident that her baby was blind and mentally deprived? Those of you who know Clay will rejoice with us that this anguish was relatively short lived! Shortly after Clay was released from this second Denver hospitalization, Fred was offered the job in OKC. We packed up with 2 cats, Brandon and Clay with a feeding tube and oxygen, in our little Subaru wagon and headed southeast. Within 24 hours of our arrival, Clay was in a new hospital setting with new doctors and very stressed out parents. Only by God's grace did this family survive Oklahoma City those 9 months we were there. Mom was extremely depressed, and most easily could be the Andrea Yates of the past year. This is not something I enjoy sharing; yet it is the truth. I was very suicidal and yes, I did think of doing my boys in and myself. God would not allow me to hurt Fred and our families that way, and it is with gratitude and praise to Him, that I can write about all of this today. Much of that time has now become a blur, but I do remember praying so desperately that God end my suffering and Clay's suffering and allow me to find him dead in his crib. Our daily lives revolved 24 hours every day around Clay and the medical issues that came with him. After about 8 months, Fred again was jobless. The oil industry had a horrific time in the 80's as many of you may remember. Never was it an issue of Fred's work ethic or abilities; it was timing in the life of my geologist.
The summer of 1986, shortly after Clay's first birthday, we came home to SC for good. Our parents paid our expenses to bring us home and get us on our feet as best they could. It was almost 5 years exactly since the date of Taylor's funeral and burial at the church I was raised in. We have attended this church since our return, and one of Clay's most profound moments of faith came at St. Thomas Lutheran. During a class with our pastor and teens ready for confirmation, the topic was 'when you cross over into Heaven, which of these pictures most matched who/what you expect to see?" Most of us picked the first picture of Jesus; the peaceful, handsome welcoming (the one that is so commonly depicted and I tend to refer to as the generic representation of Jesus). Not Clay. On a poster with about 8 different pictures, he went to the last one before agreeing to complete the assignment. Mom just figured he was not interested in the assignment...was I wrong! When this particular picture was pointed to, Clay could have burst out of the straps holding him safe in his wheelchair; he was that enthusiastic and excited! The picture?
Jesus with the children gathered all around!
It took a while before it all came together. Clay's faith is deeper than most of us. When he saw the picture of Jesus with the children, he remembered being there as on of those children held by Jesus. No doubt in his mind, nor in mine; Jesus held Clay many times when his spirit would briefly leave his broken body before being returned to it to live out Clay's purpose. Although it may be difficult for Clay to relay this to us in a concrete manner, it is always with Clay. Those of you who know him well, attest to me frequently that Clay radiates in a way that is so very different from other children. Jesus is such a part of Clay.
This story becomes more important this Easter as we remember how Jesus died so that we could all be saved and experience total joy with Christ our Father. Almost two years ago, Clay's very special and probably closest friend, Michelle died unexpectedly. Michelle had Spina Bifida and they were classmates. They loved each other unconditionally. Michelle could understand what Clay wanted to say, and she gave him her hands when he could not make his do what they were supposed to do. When they were together, if the were not able to touch skin to skin, they at least had to have their wheelchairs touching somewhere. Each was devoted to the other. Before Michelle died, Clay had given her a butterfly ring that we found on a trip to St. Simons Island, Georgia. He and I wheeled all the shops before he finally let me know the perfect gift he had spotted. Michelle always wore her ring proudly. When she died unexpectedly of complications from a 'routine' trip to the hospital, her mother told me that she would be wearing the ring. When it came time to tell Clay about Michelle, I did not know how or when, or even what to say. I do not remember much about telling him except that when I did, Clay radiated a huge smile and his eyes lit up brightly. He was so happy for Michelle! He was not sad for himself! He knew that Michelle was free of her wheelchair and whole again, talking and playing with Jesus,and chasing butterflies in Heaven! My child, the enlightened one, knew so well how happy Michelle was. At her visitation he looked at her, without a tear and we talked about her butterfly ring on her finger. We gave her a 'goodbye' card with Clay's picture in it. Before they closed the casket the final time, they placed the card and picture in her other hand, alongside the hand with the butterfly ring. Of all the people who came to visitation and the funeral, Clay smiled the entire time. (I must admit,I felt embarrassed by this, UNTIL I realized that of all those there, Clay knew more than the rest of us) This is not to say that he has not mourned Michelle, especially when school started and her presence was desperately missed in that environment. At her funeral, we released 3 dozen yellow balloons; Michelle's favorite color. We had to cut the ribbons with scissors because that had so entangled in the wind. The special needs kids clustered up beside me. When they ascended, they rose like yellow spinning daisies in clusters tied in six. This too was an unexpected tribute...Michelle loved daisies!
Clay has progressed most significantly in the months that have passed after Michelle. Often in the middle of the night he gets the uncontrolled giggles and is talking some sort of language to someone we cannot see. He tells me that Michelle visits him, they laugh, and she encourages him to do better with his hands, his speech, and everything else involving his abilities. With all the progress he has made, this last year or more, should I doubt that the connection still exists? NEVER! I know that this has been long but someone had asked me to share bits and pieces of how we have reached this leg of our destination. There is much more that I could and probably should share at some point in the future. This season of new birth seemed an appropriate time. It is never too late to be born again, Clay is a true testimony of that. Even when before he was born, we had already name him Clay. Little did we know the significance. It means: MOLDED BY THE HANDS OF GOD! How could we have known what the Potter had in store for Clay and all of us who know and love him. None of us will ever be the same.
Posted by Annette Monts Falls at 10/30/2007 03:15:00 PM


www.Annette4clay.blogspot.com

Annette Monts Falls
237 Jake Meetze Road
Chapin, SC 29036
Annette4Clay@aol.com

Even Nice Words Can Hurt

I WAS having a GREAT day! Bree said her name! It brought tears of joy! I was so excited and that made her so excited, she just kept saying it over and over! It is really the first word she has been able to say (other than 'hi') that was understandable to more than just me! She will be 2 this month and we were really getting worried that her speech may not come or at least as well as we hoped. But today I was given a boost of hope that was so badly needed.
I was so excited about it, I recorded it on my phone an sent it to grandparents, aunts and uncles! I just wanted to share it. Someone in my family called me back and it was very excited but then she said "Well, it is just great. I mean she will never be up to par with "G" (Bree's cousin), but it is wonderful for her". What? Really? We are comparing her to her totally healthly cousin that is nearly 1/2 year older than Bree? It kinda dashed my excitement and put a little damper on my day. I know I shouldn't let it get me down, but it hurt a little. Those kind of comments usually do. I am trying to let it roll off and just be happy that she is showing huge improvement and there is a good possibility that her speech ability will come soon!
I knew if anyone could understand it would be the tulip bunch! Thanks for being here, all of you!

OOPS !!!!!

Oops! Lets try this again! The overlay for the recliner came. Did it work? NO! When I called and asked about it before going through the trouble of ordering it I was told it would work on a recliner. What they really meant was it would work on the geri chair rolling recliner that they make! From what I can see there would need to be extra hoses to make it work and those hoses are on the recliner/geri chair that they make for 1,000 dollars American more! So frustrating as we have waited so long. But, in going through their web site they do make a bedside chair overlay that would work and states it works on any chair. Upside is it costs about 600.00 less than this one and it will not extend down to the feet. We can live with that. Now tomorrow I will have to convince the powers that be that this one truly will be proper for us. Then how much longer will this take?
The Elf had to go to school in her sisters chair. It does not position her well and she was so glad to get out of it tonight. Plus, bad mom when resetting her feeding pump for the new food and water volumes somehow skipped a step for the water bolus and she did not get any water all night and day! I did not realize she had not gotten water last night because she is getting a lower volume and it looked right this morning . So while I had programed in the correct cc's to put in the bolus I forgot to put in that she got the bolus every hour! UGH! I am glad her teacher noticed it at the end of the day. I am sure she will survive. I can't wait for her chair to get back.

Karate

I'm hoping to get my boys enrolled in Karate lessons this week. I called Bobby Lawrence Karate and explained the situation with my boys. I told them my 10 yr old has ADHD and Anxiety and my 4 yr old has ADHD and Autistic Spectrum Disorder (ASD). I told them we don't have much money but the boys could benefit so much from taking Karate. They said they have a special going right now where you get 2 trial classes and a uniform for $9.99. I can do that!!! I hope it works out. I'll let you know. I am sure it will help BOTH boys tremendously.

Family Fun

Im not sure if any of you read the free "Family Fun" newspaper for Utah, but they did a very good spread on children with special needs and disabilities. They even listed a bunch of organizations and how to contact them. It's pretty helpful. Just thought I would mention it. I hope you are all staying strong and pushing through. Today is a new day... Enjoy it!

Scanner is still broken

Sorry I haven't posted the handouts I got on feeding therapy and sensory integration dysfunction. My scanner is not working and my husband hasn't fixed it yet. Hopefully we'll get it worked out soon.