Wednesday, December 31, 2008
Tuesday, December 30, 2008
My story hopefully isn't too long. I have three wonderful boys, two of which have special needs. My oldest son, Trevor is 6 and had autism. He has grown leaps and bounds thanks to some wonderful therapists and teachers. He was evaluated and began speech therapy at 18 months. So the life of therapy, doctors and such are pretty much all we know. He is currently in 1st grade in a special Language Enhanced Program. He does have more struggles this year than he has before, but he is a special little boy.
Our next child, Jordan is 4 and a very typical boy. He does have lot's of energy and keeps us on our toes, but he is a ray of sunshine some days. He is very smart and is in the stage of asking LOTS of questions about everything. In many ways he is like our oldest child, because we have had all the typical development stages with him that we have never had with Trevor. He is a wonderful brother and most of the time patient with his brothers.
Now on to our youngest. His name is Josh and he is 19 months. He has several problems, some of which have been diagnosed and some not. He was born 5 1/2 weeks early with his lungs not being developed. He was in the NICU for 10 days, with jaundice and poor feeding problems. We brought him home and have struggled since then with eating. We had to buy numerous bottles to find one he could suck from. His suck was always horrible, you could hear him all over the house. When he hit about 6 months we tried him on rice cereal in which he threw up or gagged on everything. He was not putting any weight on his legs, so our ped. suggested an eval with Early Intervention. He qualified for both Physical and Occupational therapy. We thought it was just going to be a temporary thing, but here we are almost 13 months later with no end in sight. His feeding problems continue to be huge stress on us. He is only eating pureed foods, with no lumpy textures at all. He has been losing weight, and we started him on a special formula we can only get online and so far it has done a little bit of good, but as of his last GI appt, not enough. He has been into the GI doctor for reflux and digestion issues, and is being medicated for both. His OT has been working tirelessly with him for a long time and we have made small progress, but not as much as we hoped. He is going down in January for a swallow study at Primary Children's Medical Center and then we have our first appt with the feeding disorder clinic in February. He also has been recently diagnosed with Sensory Integration Disorder and we finally have a reason behind all his balance problems and motor delays. He finally walked at 16 months after we got a Reverse Pediatric Walker for him to use. Since then he has started to tippytoe walk with his feet pointed too far out. So we just got him some Dafo Braces yesterday to help with that. He is still very unsteady on his feet and falls alot, but we are so happy he is walking. He wears a weighted vest to give him that sensory input and it has also helped. He is not climbing or attempting things like that. Normally once a child is walking the Physical Therapist releases them, but in Josh's case (we have an amazing therapist) she feels he still needs more help with the gross motor and is going to work with him on climbing and more balance. He also has added speech therapy to the list as well. His language is very behind at a 8 month level (he just had his E-Lap testing), but we have a good speech therapist now too. It's alot to keep up with for such a small boy, but he has an amazing personality and puts up with alot. He is such a trooper!
I am so glad to have found a place that I can get some support with the daily struggles that I go through. I am so excited to see mom's with autistic kids here too! I have two kids with different challenges and it seems like you all understand it all! I can't wait to get to know each of you and pick your brain maybe at some point! It is amazing how much help someone can be that understands what you go through! Thank you for letting me be a part of your blog!
Sunday, December 28, 2008
My child's story is a lot different then most- Jonah was born full term & weighed a healthy 6lbs 7oz. He is my second and so we felt comfortable leaving the hospital as soon as we could. He was healthy until he turned about 12 weeks. We noticed he was coughing a lot and having a lot of secretions. So much that he started working really hard to breath. I took him to our pcp and let him know that Jonah was wheezing.(my daughter has asthma) He did not here it and sent me home giving me simple instructions to get over the "virus". It was 2 days later that I was getting really worried and I took him into another Dr at Foot Hill Family Clinic. That Dr Said that he is fine and just has a case of the common cold. I kick my self now for not listening to my inner voice. He was getting worse every hour that passed so finally the next morning I took him up to Primarys. They did a Viral Panel on him and the results came back saying Jonah had RSV. He was admitted and gave me a rough estimate of a 3 day stay. On the 2nd night I learned how many medical people could fit into that little room. He was rushed away and hooked up to all of these strange machines in the PICU. One of them was a ventilator. I had know idea that a ventilator was aka life support. He stayed on this vent for many days and he was just getting worse. His carbon dioxide levels had reached 190 ( normal is 40) He turned into a code blue and they moved him into what i call the fish bowl and hooked him up to yet another vent called an oscillator. It was a long hard month but Jonah eventually moved his way back up to the main floor and then back into our home on Feb 13 2008.
By the end of March he was sick, again with something respiratory. I took him into his pcp and he told me Jonah is going to have to go back up to Primary's. My heart fell out of my chest and it was then that I realized I have to save my son. I called a friend who was a nurse and asked if she knew a Dr who works with kids who can't breath well. She gave me the name of a Dr Pfeffer. Dr. Pfeffer saved my Jonah's life! I got an apt with her immed. and she did a bronch on him the very next day. While Jonah was recovering from that in the hosp. he caught yet another resp. virus. He was again put on the vent.
This is how life has been since Jan of 2008.Consistently in and out of the hospital. The only diagnosis they can give me is Chronic Lung Disease. (CLD) I believe that it was caused by the vents he was on and off for so long. In September Jonah got his G tube (feeding tube) placed. He also had anissen surgery. it has been a full 90 days since he has been admitted. He is always sick but it is being controlled with meds and 2 good doctors who keep a watchful eye on him. My hopes are that one day he will catch up and be off of oxygen. For the time being I hope that I can find great support with all of you.
Friday, December 26, 2008
Thursday, December 25, 2008
Wednesday, December 24, 2008
Reagan got her Pediatric walker on Monday. She's not so sure about it. She just cried and refused to do it with our Physical Therapist; yesterday she seemed a titch more interested in at least standing up with it. We'll see. We figure we'll take it slow and at her pace so we aren't forcing her. Can't say when our PT left and we saw the walker just chillin in our front room I didn't have a moment where I caught my breath a bit. It was the same thing when Jaylee got her hearing aide. It little times like those when I can't help it and the sadness creeps in. Ahh to not have these issues. Luckily my girls are so cute I forget those feelings most of the time. :)
Monday, December 22, 2008
Why is it not getting easier with each time we go through this? I am glad I know what to expect but why is it I still feel vulnerable as a mommy who loves her little ones SO much?!
Sister's tube is out and her neck is being observed for two weeks before they consider two surgeries on her. I am so grateful for prayer. I know these are HIS children not mine and they are in HIS hands.
Sunday, December 21, 2008
Friday, December 19, 2008
Last year we had just finished another ear surgery at Primary Children's on December 22nd and today we got some sobering news. I took three of us in to our family doctor and here are the results. Our six month old has his second ear double ear infection with fluid in the last month. He is recommending a specialist and surgery.
Our three year old has a congential defect we just found out about. A couple weeks ago a strange bump showed up on her neck. Come to find out all of the green goopy sinus infections and the bump are related. A cyst as a result of unclosed sinus passages???? Haven't researched this yet. Anywho, surgery number two and appointment number two with Mr. ENT, since it will never go away on it's own unless removed. Our four year old has an appointment with Primary Children's in January to get his genetic issue fixed, and yep...surgery. I am so sad for all of them because I know how traumatic this has been in the past and I know they are in pain.
I have my regular winter smoker's cough even though I've never touched a cigarette. The CT scan last year showed scar tissue on my lungs. So after a positive PPD (tuberculosis screen) and nine months of antibiotics through the health dept. I am here again hacking up a lung. But no worries you can't catch it. Asthma? Can't breathe? That would also be our five year old every winter. We catch any virus out there and take it to the tenth degree.
Family gatherings from three different sides with conflicting schedules, styles and agendas seem to bring an added measure of drama. It's not fun for me to sit in a room full of people and know that half of them genuinely dislike us/me. I find myself wish my family of origin was not reckluse or conlficted. I miss the traditions we had as a child and I miss the real spirit of Christ I want to feel now in my own home. Mix that with children who get overstimulated in loud settings and it can be interesting. Last week when we went out for a birthday dinner and my oldest son had a meltdown and started hitting me which made my mom mad...you can imagine the rest I'm sure.
So today I find myself singing "Where are you Christmas? I can not find you." Any ideas for where to pick up some Christmas cheer? I'm off to pick up our z-pack, omnicef, ibuprofen, mucinex and all expense paid trip from the pharmaceutical rep at Target.
Wednesday, December 17, 2008
I recently submitted a application using my Photo blogspot. The application was accepted. I am now a photographer for the project. I am an "amateur" with a large passion and skill. So, if you know someone that will benefit from the photo shoot, or a photographer willing to donate their time please give them the website.
* This is a repost from my blog. All of your children are eligible. PLEASE go sign up for a free shoot. These photographers can cost up to 200 bucks! (me... FREE. I don't dare charge*)
Sunday, December 14, 2008
Oh, and my husband pointed out that my description needs to be changed. Marshall is now four years old and we're getting closer to a diagnosis. Not there yet but at least we're getting somewhere.
I have to share something I had forgotten about. You know how people say that some kids with Autistic Spectrum Disorders are pretty normal and then they suddenly change? Well, today I was talking with the lady who used to watch Marshall for us during church for the hour we had to leave. We used to have a calling as Sacrament Meeting coordinators at a Mentally Handicapped Facility. Those places aren't the cleanest and we didn't want to take Marshall there. He was barely one and still quite susceptible to germs so we made arrangements for this woman and her husband to take care of Marshall for the Sunday School hour. They watched him every Sunday for several months. She said one day he just changed. He was fine with them watching him and would play and interact but one day he just zoned. He was about 16 months at the time and wasn't really talking yet but she said he just stared and wouldn't respond to anyone. He wouldn't just snap back to himself when he saw us again either. It was like he was looking right through us. The longest he did this was 20 minutes. The thing that caught my attention today was when she said, "He just changed suddenly. One week he was fine, the next time he would zone out." Strange huh? He did this every time we left him after that. He also did it in nursery. He just stopped what he was doing. He didn't cry, or talk or anything...just stared off into space. It took Brian a good 20+ minutes to bring him back after that one too.
Saturday, December 13, 2008
Friday, December 12, 2008
Last night as we were doing the hustle and bustle of night time routines and night time work, I almost missed the moment.
You know, the moments where you sit back and smile and think "wow, he is mine."
The week has been a tantrum of a week. We have been asked to start trying to send him into PT and OT alone. It has taken the entire session to get him to stop crying. We did it with Speech today and he cried for a while as well. It is tiring. It is exhausting and it is emotionally sometimes more than I can take and wonder how much more I can handle. All I want is to have a conversation, a simple one. All I want is to talk to my son.
Where is my magic wand?
On nights like last night I wonder how I got to be so lucky. He lays there in his big boy bed all sweet, quiet and an angel. It takes my breathe away.
Thursday, December 11, 2008
Wednesday, December 10, 2008
Hi. I’m Lori. I’m new to Thru The Tulips. I’m really excited about “meeting” all of you and sharing our experiences, frustrations and joys together. My story is long and you can read more about details on my personal blog on this link and this link. Basically, in a nutshell, I am a mother of two micropreemies. Jaylee was born at 26 weeks weighing 2 lbs 2 oz. Reagan was born at 25 weeks weighing 1 lb 12 oz. Jaylee is a month shy from turning 6 and is nearly caught up. Her life has been full of challenges, special education, and pretty much anything you could throw at her therapy-wise. She had Cytomegalovirus which caused her hearing to be damaged from birth until age 4.5. During these years we unsuccessfully tried everything in the books and with therapists to help her communicate. At age 3 she was saying about 20 words and the doctors were considering diagnosing her with Autism. She was attending the Utah Schools for the Deaf and we were learning how to raise a hearing impaired child (deaf in her left ear, with the hearing aide 80% in her right) Fall of 2006 we had a miracle and her hearing slowly started returning. They can only surmise that the CMV did not actually cause permanent brain damage to the language center, just suppressed it’s ability to work. When the virus starting leaving her body (it usually stays for 4 years) her brain was able to process sounds. If you met Jaylee today you’d never believe that she ever had a hearing impairment. (her hearing is now 60% in her left ear and 80% in her right ear). Her verbal skills are awesome and we are so proud of the progress she has made. Her long-term issues stemming from the CMV and prematurity are a mild case of Ataxic Cerebal Palsy in her left side and ADHD. She can’t ride a bike, her conginitve processing abilities are slower than her peers, and she is a super big ball of hyperactivity, hyperfocus and overstimulation. But, man, she is one of the happiest kids I know. For what Jaylee’s life could have been like with CMV we are so grateful for the “small” problems JJ has. She is super sweet, smart, and such a loveable kiddo. Jaylee is in Kindergarten and is loving it. She loves to draw, write, and work on hands-on projects. Learning to read is proving to be a hard thing. JJ does really well with “rote” things but when you have to take them and process it to make an abstract notion we lose her.
Reagan is a sweet little babe. She is now 16 months old, 12.5 months adjusted. Since she is still young her life is still very unknown. She has the most determined personality I’ve ever met so if anyone will overcome the odds in her direction, she can. Reagan had a grade III head bleed while in the NICU and has seen some damage because of it. Luckily we’ve had her in physical therapy since she was 5 months old and it has helped her muscle tone quite a bit. Her tone is still very stiff and she has a hard time with gross motor skills. She just learned how to crawl two months ago and we’re working on cruising with her right now. We just got on the list for a walker and they will be watching her over the next two months to determine if she needs leg braces. Reagan was also recently diagnosed with Microcephaly.
My girls are awesome and I’m so lucky to be able to parent these sweet girls. For as draining as it is to have two children with special needs I feel very blessed for the opportunity to know what I do going into it with my eyes wide open on our second child. We have learned a lot over the 5 years of therapy with Jaylee that has been invaluable to our experiences with Reagan. I’m a stay-at-home right now and enjoy the time I have with my kids. I have an awesome husband who loves our little girls fiercely as life itself. I love running, working out, reading, writing, blogging, and am completely addicted to LOST. Thanks for inviting me along!
Tuesday, December 9, 2008
Information for Marshall's doctor
Marshall was born on October 24, 2004 at 33 weeks 6 days gestation via emergency C-Section. Prior to that time, his mother had been having pre-term labor and was taking Nifidipine to stop the contractions. She also had been given Magnesium Sulfate 2 times (I think it was for 2 days each time). When Nifidepine wasn’t working to stop contractions, Aprilyn had to go to Labor and Delivery where they gave her a shot of morphine and phenergan and sent her home. She was bleeding a lot and had Placenta Previa. She was hospitalized 1 week prior to the birth of Marshall and kept in Labor and Delivery. When the contractions got closer together and the Nifedipine wasn’t stopping them, the doctor ordered Magnesium Sulfate. Aprilyn was having a lot of difficulty breathing while on the Magnesium Sulfate. The contractions were coming strong even though Aprilyn was on Mag Sulfate. The doctor finally agreed to let her deliver. The anesthesiologist gave Aprilyn an epidural and then came in to pop her water. She tried to tell the doctor (Dr. Thorpe) that the baby’s cord was in the way so the doctor ordered an abdominal ultrasound. The ultrasound tech couldn’t see anything but Aprilyn had seen it on a vaginal ultrasound. The doctor wouldn’t listen and popped the water anyway. Marshall’s cord prolapsed and Aprilyn was immediately prepped for a C-Section. Thankfully, a nurse decided to check to see how the baby was doing. Marshall had quickly descended down into the birth canal so the nurse had to shove him back up. The C-Section turned into an emergency with the NICU team not even being warned Marshall was coming. Dr. Thorpe had to use forceps and a vacuum to get Marshall out. He was immediately bagged until the respiratory therapists could get there and tube him. His APGAR was 2 at birth and either a 4 or 6 at five minutes. Marshall was rushed to the NICU where he was put on a ventilator and bili lights (he had severe jaundice).
Marshall spent 3 weeks in the NICU. He was on the ventilator for 24 hrs, then on blow by oxygen, then by day 3 he was breathing room air. He had to be on 2 bili lights and we weren’t allowed to hold him for several days. After about 3 days, we got to hold him for 20 min. twice a day. After about a week, he was transferred to Nursery B, where we were told at that point he was just a “grower and feeder”. He was fed by gavage tube until he was 3 weeks old (36 weeks gestation) and learned to suck, swallow, and breathe. He had a lot of apnea and bradycardia while in the NICU and after he was released. A test run at the NICU (some kind of probe test? I just know it took all day.) and it was decided that his apnea was due to his Central Nervous System not being properly developed. He was put on Caffeine Sulfate and he improved. He was sent home on an Apnea monitor and taking Caffeine Sulfate as well as iron drops.
Home With a Preemie
Marshall was always a fussy baby and not easily soothed. He loved being swaddled TIGHT and would only tolerate his swing if he was wrapped very tightly. He was easily overstimulated. The NICU had a class for new preemie parents that Aprilyn attended. They taught her that when the baby gets the hiccups it’s a sign of overstimulation. He got the hiccups a lot but once we swaddled him tightly and took him into a quieter, darker room, he was fine. He didn’t sleep well at all! He still had quite a bit of apnea and bradycardia. He was able to get off the monitor in January (I think) and caffeine (I can’t remember when but it was quite a few months.) Marshall never slept very much and was irritable a lot. We kept thinking it was colic and it would improve as soon as he grew out of it. We gave ourselves goals like: we can deal with this until he’s 4 months old and then he’ll grow out of it. When he was 4 months old and not getting any easier, we thought it was just that he was preemie and we had to wait for his adjusted age to be 4 months. That came and went with no improvements.
When We Noticed a Problem
Marshall was not really a happy baby and always so difficult but we love him. When he was about 6 months old, he would sit in his high chair and bang his head on the back of it repeatedly. He also liked rubbing his head on the floor (still does) and when he would sleep (yes, he occasionally slept), he slept with his head pressed in the corner of his crib. He still seeks pressure on his head today. When he was about 9 months old, he would get into the cupboard but not take anything out. He just opened and closed cupboard doors over and over and over. He started banging his head more and more as he got more mobile. He had to be held most of the time or he would just cry all day. We wore him in a SNUGLI until he was 9 months old. Marshall was fussy and irritable a lot. He would bang his head on HARD things like the metal door or the cement steps outside. We were worried and knew there was something not quite right about him. One time, when he was about 18 mo or so, he drank an entire bottle of white board cleaner and said it was yummy. He brought the empty bottle to Aprilyn because he wanted more. We took him to the ER and they drew his blood and we waited there for a long time but he was fine. In our search for help, someone recommended The Children’s Center in Salt Lake. Aprilyn took him up there and it was the first time someone took her seriously in regards to Marshall’s behaviors. We had previously taken him to Wasatch Mental Health but they said there was nothing wrong with him except he had sensory issues and they don’t know enough about those. The social worker at The Children’s Center recommended we see a Developmental Pediatrician and get into Occupational Therapy. The stress placed on our family was (is) so great that the social worker worried about us as parents. We don’t get much of a break. We also saw a Child Psychologist (or was it a Psychiatrist..not sure). She did prescribe Clonidine for him to help him sleep. See below for a list of all meds we’ve tried and their side effects. Marshall was REALLY angry most of the time. He would hit everyone all the time and bang his head a lot too. He still bangs his head on us but not as hard as he used to. When we first put him in a regular bed and had the boys' bunk beds separate, we put the crib bumper pads around his bed and put the bed rail on that would normally be used when you have the top bunk set up high. He still craves pressure on his head and we find him smashed up against the head of his bed every night so we put a body pillow there.
Marshall hates to eat. It has been a constant struggle with him from the very beginning. He was breast fed but in order to get him to eat, he had to be in a dark, quiet room and had to be completely swaddled or he was too distracted to eat. When Brian would give him a bottle at night so Aprilyn could sleep, he had to be swaddled tightly and Brian had to keep moving the bottle around to get him to keep eating. As he grew, it was harder to breast feed him. He finally quit breastfeeding altogether at 8 months. He just refused to nurse anymore so we had to buy formula. When he was 4 months adjusted, he had to eat baby food to get him to poop on his own. He loved sweet potatoes. He ate pretty well until he turned one. Then it just all stopped. He wasn’t gaining enough weight so he had to be put on Pediasure to help maintain what he had. As he has grown, his dislike of food has increased. Meal time is his LEAST favorite part of the day. It’s a huge battle just to get him to eat things we know he likes!! He drinks 1-3 cans of Pediasure a day. Sometimes he won’t even drink that.
We started OT about 2 yrs ago I think. After the initial eval, the therapist said he’d have Marshall sleeping through the night and not banging his head within a few months. It didn’t happen. Marshall would NOT tolerate swinging at all. The OT said swinging is very calming and organizing but Marshall was terrified of it. It took about a year to get him just to tolerate swinging.
We were DESPERATE for some sleep. We kept telling the pediatrician there was something wrong but he just blamed us and told us it was poor parenting. The doctor told us we had to just let him cry it out. The problem was that when he would wake up in the middle of the night, he wasn’t crying. He was playing in his crib. We decided to video tape it. So, the first time he woke up at night, we turned on the camera. He would play for about 20 minutes, then lay down and sleep for 20 min and then wake up again..all night long. Nahthan had to sleep on the floor in our room because Marshall would wake him up. We decided to switch Pediatricians because we really felt like there was a reason this child was waking up and our doctor would not recommend a sleep study. We tried seeing Dr. Marci Connor in American Fork (I think that’s how you spell her name). She recommended Dr. Kathleen Pfeffer, a sleep specialist. We went to see her and she said we had to get him sleeping before we could do a sleep study.
Meds We’ve Tried
Clonidine – made him very irritable the next morning and he couldn’t wake up all the way. He was about 18 mo old when we first tried this one. He currently takes this one 1 hr before bed and it works pretty well. Sometimes he sleeps through the night even!
Trazadone- worked great but not enough. Had the desired effect but still didn’t make him sleep through the night. Eventually he gained a tolerance for this drug and it stopped working altogether.
Melatonin- worked initially but never made him sleep through the night. It was enough to settle him down for sleep when coupled with Trazadone.
Remeron- made him cry out in his sleep a ton. He wasn’t ever fully awake but had fitful sleep and didn’t sleep through the night.
Neurontin- Dr. Pfeffer prescribed this one after one of his sleep studies showed a ton of Periodic Limb Movements. This made him SO upset!!! This was the worst drug we’ve tried on him as far as side effects go. It increased his undesired behaviors, (i.e. screaming, hitting, head banging, not tolerating ANY change).
Rozerum- no bad side effects, just didn’t help him sleep through the night.
Zoloft- A developmental Ped we saw prescribed this. I can’t remember the name of the doc but she’s in SLC and she’s supposed to be the #1 developmental Ped. He got REALLY angry while on this medicine and we begged to have him taken off. The doc increased the dose instead. He got even angrier! Finally, we weaned him off ourselves.
Dextroamphetamine- made his anger issues get worse. We noticed a negative reaction right away but Dr. Jones wanted to increase the dose instead of change the medication. Increasing the dose just made him even angrier. We finally convinced Dr. Jones that this was a poor choice of medication. Marshall was 3 when he was on this one.
Risperdal- We noticed a significant change very quickly when Marshall was put on Risperdal. He still got upset but it was more like a typical 3 yr old. It was such a RELIEF!! Originally, Dr. Jones prescribed 3 tablets a day but we started with one and loved what we saw. We kept him at one pill for a few weeks. Then he started getting extremely angry again so we upped the dose to two tablets. We are going to try adding the 3rd now. He’s been on 2 tablets a day for several months now.
Ritalin- if anything, this drug made him even more hyper than he already is and that’s saying a lot!! Again, we were told to increase the dose. We did but it still made him more hyper. We decided this was not the right choice of drug and we took him off.
I decided to have our Pediatrician be in charge of medicating the boys. I've felt very uneasy with the choice of medications the ADHD doc prescribed and felt like we were getting nowhere. I felt like the ADHD doc didn't really know what he was doing with Marshall. He kept prescribing things that weren't working for Nathan either. So, I had a sit-down-and-chat appointment with the Ped last week. We talked for about 2 hrs. I let his nurse keep our file of medical tests and evals so she could scan it. It probably took them a few hours to get it all scanned in. He asked me to write up Marshall's history from birth to now, including meds we've tried and how they worked for him (or didn't work as the case may be.) I will post that in my next post so you can all read it if you want. It's long so it's up to you if you want to read it.
So the Pediatrician said that for Marshall, there is definitely some sort of problem there. He explained how with things like Autistic Spectrum, Bi-Polar, Oppositional Defiant Disorder (ODD) and other things like that have these gray areas. It would be like if you had a bunch of circles with the center parts connecting. (Am I making sense?) In the middle, where all these disorders connect, there are certain behaviors that can be due to bi-polar or autism. After looking at the list of behaviors Marshall has and how meds have affected him, the doctor said for now we can rule out Bi-Polar and ODD. The doc also said the other problem with finding a diagnosis for him is that we are probably dealing with 2 things. In fact, he's nearly 100 % sure this isn't just ADHD or JUST prematurity, or whatever. All roads keep leading us back to ADHD and Autistic Spectrum Disorder (ASD). So, for now that's the route we're taking. That's the roadmap we're going to try to follow in looking for ways to teach him and help him suceed in life. I love this doctor's outlook on diagnosis. He made sure it was CLEAR that a diagnosis IS NOT what Marshall is, rather than it is a problem he HAS. Marshall may have ADHD and Autism but HE is not Autistic. He is Marshall who has an ASD. This doctor is good. So for now, the doctor wants to work on one area of concern at a time. Since so much of our behaviors depend on sleep, that is the first area of concern he will be working on. So, Marshall's dose of Risperdal has been increased as has Clonidine and we're adding Melatonin at night. We're SO desperate for sleep. We're so exhausted. I think he's been sleeping worse since his blue rope lights burned out and my husband put a regular night light in his room. It casts shadows on his wall (he is on the bottom bunk of the bunk bed). I'm out of money so I'm hoping someone on Freecycle has some they don't mind giving up. It's a long shot I know, but when you're exhausted, what do you do?
He also said he thinks Nathan was on too high a dose of Concerta. He said just as there are gray areas on Autism and things of that nature, ADHD and Anxiety also overlap. Nathan has A LOT of anxiety and has for a long time. So, for now, Dr. C is decreasing the Concerta, adding Zoloft (because the straight anxiety meds weren't working at all!!) and taking away the Trazadone he was taking at night. Dr. C doesn't like Trazadone because it doesn't allow the child to be themselves. Now that Nathan is starting Zoloft, I need to make sure he and I are talking all the time. I have to keep track of how the meds are working for him and also keep track of his weight.
I'm overwhelmed. I'm sick with croup too. I don't know how I'm supposed to keep track of both of these boys but somehow, I will. I have to track their weight, what Marshall eats (or refuses to eat), do feeding therapy with Marshall, work on fine motor skills and attention with Marshall, talk to Nathan about how he's feeling, among other things. I'm also the Cubmaster (a big job) and am so busy but I will hang in there somehow.
Sunday, December 7, 2008
The last few months of my job I have carefully listened to those around me. I have noticed more moms that "walk through the Tulips) and others that walk by and stare at the tulips. The workers can be far less "nice" and I have found a breed I am not always proud to call coworkers.
As we were sitting at a break a young man called another boy a "retard." I was FLOORED. I know that Tyler is not "retarded" and his cognitive functions is "ok" but why is it that I still have such anger and hatred for that word.
That word comes with the same distaste as others making fun of "short buses." It is like the rule is a mom who sends her kid on one can make fun of it.. but you outsiders can't. BUt the R word. That is just bad! Very bad.
How do you then turn and take the time to explain why that word shouldn't be used? How do you ladies take those Moments and what do you do?
Thursday, December 4, 2008
I know that this could happen to any new walker. However, I can't help but think that this could be her life, for the rest of her life. These are the painful little reminders to both of us that she has needs, special needs. I am okay with the special needs until something out of the ordinary happens and my thoughts catch me off guard. I am sure you can all relate to the feeling. It hurts just a little every time I think about it!
On a happier note, she is doing really well and learning lots so fast. I can tell that the words are right on the tip of her tongue and she really wants to tell me words!!!
Tuesday, December 2, 2008
This morning I was trying to explain to him that we were going to the Castle Dentist (it is decorated with castles, dragons, kings, and knights--and Mason LOVES all these things). I told him that the dentist was going to give him a magic potion that was going to make him fall asleep, and when he woke up he would be a knight. He thought this sounded like a fun idea. My husband was holding him on his lap when the anesthesist gave him the shot in the arm that knocks them out, and as he was giving him the shot, Mason said, "I don't want to be a knight." It was kinda sad, but still cute. Then after the procedure was over and Mason had woken up, we were carrying him out to the car (he was still so loopy) and he said in the most slurred mumble jumble I have ever heard, "Am I a knight now?" It was so cute. He did really well, and I'm very proud of him.
I'll put a plug in here for Castlecreek Pediatric Dentistry, because they were awesome. Dr. Simkins was great, the nurse anesthesist was great, and all the staff were great. I would highly recommend them if anyone is looking for a pediatric dentist!
Thursday, November 27, 2008
My Name is Nancy. I am a stay at home mom that works part time. I work in the evenings so that all our "issues" are dealt with in the day and we get all the benefits of working and the SAHM part.
My son is Tyler. He is a 25 week preemie. He was born in 2005 and came home with us on December 23rd 2005. One day before his due date.
His entrance into the world brought us into a world we only heard existed. It has been a roller coaster that we have endured as well as we can. We have enjoyed most of the journey. There are still things we are learning to deal with and as they come we just change our course.
Tyler was diagnosed with grade 3 and 4 IVH ( inter ventricular hemorrhage) at a few days old. It has since brought with it a myriad of events that has lead us to today. He developed hydrocephalus and craniosynostosis. He has ROP ( retinopathy of prematurity) that has left him with low vision. And just recently we have received a diagnosis for Cerebral Palsy.
Tyler is now three and we have entered the school age world of preemies. We are so proud of where we have come from and where we are going. Tyler is not the baby on paper and we are always so amazed at what he has accomplished.
I can't wait to continue reading and writing.
Wednesday, November 26, 2008
We are mothers. We carry the burdens of the world on our shoulders and the tender miracles of the future in our hands...
One of the most successful women's lessons I've ever witnessed at church started with Kitty Sue Anderson reading off a four page to-do list of the 'perfect mother'. She never got to ask a question or make a single comment. Every woman in the room it seemed, started making comments, divulging the unspoken secret of dirty houses, unmade dinners, and other neglected household duties. For the first time, I felt a camaraderie and a belonging to those women. I felt a new-found relief and comfort in the illusion that I was not so different or inadequate a homemaker as I have always believed. I was among sisters.
I have tried to remember that comfort. I've tried to hold onto it. But good feelings tend to slip away once all the women go home and get back to the work of grinding their wheat, cooking their casseroles and homeschooling.
This week we were almost on time to church. We sat nearly on the front row because of it. It should have been easy to pay attention to the speakers. Instead my attention was drawn to the frayed edges of a small hole in the upper leg of A's pants. My boy, dressed like a vagrant at church. Not because we are destitute, or in need. But, because his mother had failed him. They were the only clean pants he had to wear. That idea stuck in my throat reminding me of all the things I've failed to do recently. All the neglected housework. All the responsibilities that have slipped through the cracks. It did not do me any good to turn away from him. My attention only turned to MK. I had barely combed her hair. No pig tails, no pretty bows to match her outfit. Her hair was full of static, and what wasn't sticking straight up, was stuck flat across her forehead like a sweaty cowboy who has just removed his hat. I was too busy preparing my lesson and getting myself ready to take good care of her. It's not as if people wouldn't see her, stare at her. A bright pink wheelchair tends to draw attention. Another reminder of a mother failed. Another rush of guilt. I should have listened to the speakers. Perhaps there could have been some solace to glean from their words. Instead, I diverted my eyes downward to stare awkwardly at the floor, unable to rid my mind of it's own cruelty.
The last few months of life have come at me with a barrage of adventures filled with complications and the necessity of arduous response. I am a weary survivor.
Today I sent A to school with dirty pants, and a wrinkled shirt, but with clean underwear. MK's socks don't match, her hair is full of static again, but there are pigtails in it.
It's all about compromise.
I may not be the kind of mother I want to be.
My house may not be as clean as it should be.
The laundry may not be finished. Or started.
I may not be a good mother.
But I am good enough.
Monday, November 24, 2008
managing feelings appropriately
playing well with other children
using pencils and pens, writing tools correctly
exploring cause and effect
appropriate social behavior
telling the truth
managing anxiety and separation
sorting and classifying
paying attention to detail
sensory overload in the classroom
risk taking behaviors
reduced verbalizations of need, reverting in age
trying unfamiliar foods
staying engaged and interested in school
taking and hoarding things
Saturday, November 22, 2008
Nathan has ADHD and has been losing weight like crazy! He's 69 lbs now but he was 74 in August and the Pediatrician was concerned then! So, we've got to really push Nathan to eat more. What is it with my kids and eating problems? I wish I could lose weight as fast as Nathan did! The doctor also recommended that we try something like Zoloft for his anxiety because it has an anti-depressant in it as well. On Halloween, he was not even excited. He was too mellow. I kept asking if he wanted to go trick or treating with his friends and he kept saying, "I don't know," or not answering. Strange...
Marshall lost weight again too. He's now 29 lbs. That's quite a few pounds of loss from last time he was weighed. Last time he was I think 34 lbs or something. I was SO suprised when he was that heavy. But here we are. He is 4 now and 29 lbs. Time to push him to drink more Pediasure.
I expressed my frustrations and concern with Marshall's behavior, lack of sleep, eating problems, and anger. He said Marshall is a perfect candidate for Risperdal. I told him how Marshall OBSESSES about bad guys and monsters. He hardly ever sleeps through the night anymore. He wakes up crying that the bad guys are coming back. I remember Nathan having bad dreams and even having some night terrors but this is so different. I asked the doctor about it and he said it's normal for kids to obsess about something but kids with Asperger's Syndrome do it to a more extreme level. Did he just say what I thought he said? Yes, he used Asperger's Syndrome to describe Marshall. I expressed the difficulty in raising this boy. I told him (and nearly started crying) how it feels like I'm going crazy because people don't believe me that Marshall has problems. Bad parents. People don't say it out loud but they hint around to it. The doctor told me I'm not crazy and he thinks we're heading down the right track with him. He thinks Marshall probably needs something like Zoloft as well but he wants to see us increase the Risperdal first and then see if we need it. I mentioned my concerns about Risperdal being an anti-psychotic and therefore a dangerous drug. This doctor is really NOT one to prescribe medicine unless absolutely neccessary. He explained that Risperdal is working wonders for Marshall (and it is!!) but it's obvious he's not quite on a high enough dose. So, I'm feeling like it's time to leave the ADHD specialist and let my Pediatrician handle the meds for my boys. I've felt uneasy with the specialist for a while now. He's an older gentleman and very kind and was the first one to give me meds for Marshall. I just don't agree with his choice of medicines and neither does my Pediatrician. The Pediatrician said he would never give Marshall a stimulant. The ADHD doc has twice now and twice it's been awful.
I think there comes a time in every parent of special needs kids' lives that they have to deal with the fact that their child will always be different. I've never dealt with it. I think it's because I've had to fight so hard to get anyone to believe me that I half thought I was making it up! Then we would have a REALLY bad day and I would know that I'm right; That there is something wrong with Marshall. Thursday afternoon we had to go to the Scout Office (ugh. I'm there WAY too much). Every time we go there, Marshall has to go up one set of stairs. On our way out, he has to walk around the small rock wall that surrounds the flower bed and flagpole. He has to ask the same questions at the same places when we drive anywhere. If we drive past the Scera Pool, he says "There's the Scera Pool. It's closed. Mom, when can we ever go to the Scera Pool?"
The four year old boy that I babysit was excited when Marshall went to school Friday because then he could play how HE wanted to play. Marshall can't handle playing with his toys any other way than what he has in mind. Stubborn? OH YEAH! It made me kind of sad that this boy was happy to see Marshall leave. They didn't really get along that well. One day the boy scratched Marshall's head because Marshall was playing with the middle seat belt buckle. Who cares? Seriously, is it worth making my boy bleed? Marshall still has a scar on his head. This boy has hit him, screamed at him, and slammed his fingers in the door because Marshall did something he didn't like. Is that how it's going to be for Marshall? He is quite an annoying little boy but we just try not to get upset because he can't help it. He's just being himself. Will others not tolerate him? Will nobody want to be his friend? Only time will tell.
"Ima Mom" took these pictures last week. What do you see? We could not get him to smile that much. That's what you get when you take this boy to a new place, to do a new thing, and see somebody new who is talking to him and taking pictures of him. He wasn't that happy but he's still cute.
Friday, November 21, 2008
So we started with a baby spoon dipped in food and he has to open big. She let him play with a toy while he did this. So, for example, he played with a Mr. Potato Head set that had a couple of baby potatoes and a couple of carrots with all different stuff you can put on them. Every time he successfully let a spoon go in his mouth, he got another piece to put on the Potato Head. When he started, he actually began with this race track that runs two cars down simultaneously. When she switched food, she switched toys. She gave him some berry applesauce, which normally he would absolutely REFUSE to eat. She started with the spoon dipped in the applesauce and had him open big. She did about 10 or so of those before she handed it to him and had him dip and feed himself. Then she tried again and gave him actual spoon fulls of the stuff. He ate it without a complaint. She and I both think it's because he was so distracted. She gave him vanilla pudding which he grabbed and ate himself. No need to tell him twice. Apparently yesterday was "I love vanilla pudding" day. Today will most likely be different because that's how Marshall is. With this routine, he even let her put Ravioli sauce in his mouth and it had some chunks on it. She was amazed!! She said she thinks Marshall's eating problem is behavioral. It's not our fault. We don't know when or why it happened. Perhaps it has something to do with us trying to feed him a lot when he would wake up all night long. Maybe it really is silent reflux and it's never been properly treated. It's hard to know.
Thursday, November 20, 2008
Tuesday, November 18, 2008
Cooler Hearing Aids
Monday, November 17, 2008
Word got around about Bree’s schizoencephaly at Ogden High School (my alma mater). HOSA (Health Occupations Students of America) does a fund raiser every year and this year sponsored our Bree, our family really. OHS class of 2001 may remember the first Mr. Ogden Pageant…
We were invited to attend this year’s pageant it was a BLAST. I had so much fun watching the crazy boys dance around the stage showing off some truly creative and impressive talents; remembering life before life. I was taken back to my high school days. It was so much fun! I really loved it! However, when they talked about Bree I took her up on stage, I was grateful for her and our other children. I would never trade any of them or the problems we are facing for anything. The things I never knew I never knew.
I want to say thank you. I know it is not ever going to be enough. Where do I begin? Whom do I begin with? How do you tell an entire community that by them pulling together it means more your family than simply a monetary value? I in no way mean to make that sound like it is not important to us, because it is just the opposite. I did not even dream that it would be to such a great extent. Luke and I still have a hard time wrapping ourselves around it. Yes, we have both been involved in helping others even donating to fund raisers when we were high school students. Never did I truly realize what it means to be on the other side of it. It is a humbling, touching, emotional experience. THANK YOU. To a community; the businesses, churches and families that donated items to be raffled and gave checks. Thank you to the Ogden High Student body and their families for the donations and thinking of us, and letting us be a part of such a fun night. The boys that were in the pageant, willing not only create incredible memories for themselves but for doing it for little Bree! HOSA and their advisor, Mr. Christensen I can absolutely not forget the two sweet girls that organized all of this… Sara and Amanda! The two of you along with all of those boys will do great things! I know because you have all ready started!
Bree will hopefully be starting sign language classes and will continue with her Physical, Occupational and Speech Therapies. Bree Anne is going to benefit more than I even thought.
Sunday, November 16, 2008
We were blessed with our angel in October of 2004. Having her completely changed our lives. Our precious little baby girl was born 13 weeks early under traumatic circumstances, to say the least. Unfortunately, bad medical care played a huge part in our whole story. It's a complicated and painful one to tell, so I'm going to just leave it at that. She lived for 23 cherished days, before passing away due to an infection she got in the nicu. She touched our hearts and changed our whole lives. I truly mean that. We'll always be grateful for all that she brought to our family, so much love. We love you, we miss you N.
Fast forward 2 yrs....gosh, if only I could have fast forwarded time as easy as that! We got a couple of 2nd opinions and a new doctor and I got my cervix stitched up when we got pregnant with baby #3 to keep it from opening prematurely. We hoped that was going to be the worst of things, but I just had a feeling there was going to be more to this next pregnancy than that. At 17 weeks we found out that our new baby, another girl, had spina bifida, hydrocephalus, and clubbed feet. It was really hard to find ourselves on yet another roller-coaster, after such a huge loss before. But, we accepted it, and were hopeful. We really just wanted this baby to live and be with us. At 25 1/2 weeks, her head measurements on the ultrasounds were starting to measure below 5th % which was not typical for SB kids who usually have really big heads because of the excess fluid on the brain. We were sent back to meet with the neurosurgeon we'd seen after the initial diagnosis, who was to do her surgeries at birth. He gave us absolutely no hope, painted a very grim picture of what her life would be like and encouraged us to terminate now, saying "it could be tricky, but it could be done" this far into the pregnancy. How do you ever forget words like that? I wish I could. It was terrible. But, one thing was very clear he was not going to touch our baby! We thankfully, got in for a 2nd opinion with another pediatric neurosurgeon about 3 weeks later, who was so good to us, and exactly who and what we needed. He made us feel that he valued our child's life no matter what, and said, it was way too early to be so pessimistic, and let's just wait and see....It was a long wait.. But, she was born at term which was a blessing in itself. Her first surgery was at 1 day old, to close the opening in her back. And her second surgery was at 4 days old to put a shunt into her head that drains the extra cerebral spinal fluid off her brain. None of it was easy, but we brought our baby home with us 3 weeks later, and she's amazed us all from the very start.
She is our miracle. And nearly 2 now. She is pretty much paralyzed from the hips down, with the exception of being able to kick her legs up when she gets excited or happy, b/c she has the very upper muscles in her legs that do work. (it's really cute and makes us laugh when we see them kick) But, because her spine was open in the womb, those exposed nerves were permanently damaged. So, even though her back was closed at birth, it doesn't change the damage that has occured. She has bowel and bladder issues, but we have things that help w/ that. She's also had surgery to fix her clubbed feet, and wears braces now.
I relate to having lots of doctors and appointments, PT,OT, and Speech... it's not easy some days, there is so much to do and many special needs...but, I too am very grateful to have my child here to hold and love. She has learned to army crawl, and has a little purple wheelchair that she can push herself around in (when she's motivated for both, that is!) She loves to laugh, and play with her brother. In most ways she is very much a typical little girl...but with legs that just don't help her out!I'm glad to be here with you guys, and even though we all have different stories, I know we share many of the same feelings having kids that are "special" and a life that is different from most around us. I love what everyone has shared on this blog so far! Thanks for listening... Liz
Saturday, November 15, 2008
Wednesday, November 12, 2008
Yeah, sure Marshall. We almost believe you...
This is why I've been MIA lately. Marshall's sleep habits are all messed up. He hasn't slept through the night in I don't know how many days. I've lost track again. His behavior has been so bad lately that it's all I can do to survive my days. I've been trying REALLY hard to stay positive. I've been praying that I can see Marshall as Heavenly Father sees him and love him despite his challenges. I think it's working because I've had more patience with him. Well, with both kids actually. That doesn't mean we've had it easy here. The ADHD doc we see said we have to get Marshall's behavior problems under control now or we're gonna be reading about him in the paper. The doctor said he needs counseling but my options for that are only Wasatch Mental Health, which I have had ZERO positive experiences with. I'd rather not waste my time. So now we're trying Ritalin in addition to Risperdal. He also takes Clonidine for sleep. So, that's what has been going on here. Sorry I have no time to comment on anything. Welcome everyone who is new. Hopefully soon things will settle down enough that I can read more and blog more. I'm also Cubmaster for 2 Packs and currently filling in for the Wolf Den Leader as well so I'm INCREDIBLY busy (and tired).
Monday, November 10, 2008
Friday, November 7, 2008
Thursday, November 6, 2008
The Utah Autism Coalition needs your help. Recent laws have passed in 8 states requiring health insurance providers to cover treatments (like speech therapy, physical therapy, and occupational therapy) for autism. They are working on a similar bill here in Utah. The only way these laws passed in other states was through an enormous grass roots effort. Check out the blog and see if this is something that interests you. If so, join the e-mail list, and maybe even volunteer to be a liaison for your legislative district. The bill will only pass with the help of parents, grandparents, friends, and professionals all over the state. Let Utah legislators hear your voice. This legislation is supported by Autism Speaks.
Join the e-mail list by sending your contact information to Utautismcoalition@gmail.com
Check the blog for updates: http://utautismcoalition.blogspot.com/
Sent on behalf of Adrianne Andersen, Occupational Therapist, Primary Children's Hospital
Wednesday, November 5, 2008
What ever happened to Thanksgiving?!! Does this bother anyone else?
I like Thanksgiving. For more than just the food. I think it's important to be grateful for the blessings we have. My sister gave me a great idea to put a little bit more emphasis on Thanksgiving. At the first of November, she and her kids make a poster that says: "We Are Thankful For" Everyday, each member of the family writes something on the list that they are thankful for. On Thanksgiving they read everything off of their poster.
I have never done this before, but we started our poster yesterday. Already, we all seem a little bit happier. It's a nice change of mind frame to be thinking about the blessings you have, trying to decide what you can write down today.....
I know this has nothing to do with special needs. But I think it's a great idea and I wanted to pass it on. Especially because I'm thankful for all of you. My friends who truly understand. THANK YOU! and have a happy THANKSGIVING this month!