Friday, February 27, 2009
"The Blessing" by John Waller 8:35pm
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
Thursday, February 26, 2009
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 :)
Wednesday, February 25, 2009
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."
Tuesday, February 24, 2009
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.
Sunday, February 22, 2009
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.
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
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!
Saturday, February 21, 2009
Friday, February 20, 2009
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.
Wednesday, February 18, 2009
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!
Tuesday, February 17, 2009
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?
Sunday, February 15, 2009
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.
Saturday, February 14, 2009
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
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?
Friday, February 13, 2009
http://www.gokeytech.com/ and another site........www.ablenetinc.com
Thursday, February 12, 2009
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."
Wednesday, February 11, 2009
Tuesday, February 10, 2009
Monday, February 9, 2009
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
Annette Monts Falls
237 Jake Meetze Road
Chapin, SC 29036
Wednesday, February 4, 2009
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!
Tuesday, February 3, 2009
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.