I guess it's official

   JT's doctors have been using all of the words that mean Cerebral Palsy to me.  Every time I ask them straight out they dance around the subject saying things like, "Well, we put a lot of kids in that group.  Kids with all sorts of problems/abilities yadda yadda yadda..."  I am sure you guys can fill in the rest, but they NEVER answer me.  This has been going on for almost 2 months and through 5 doctors and therapists.  Finally we went to a new doctor at our new rehab.  I love her.  Anyway, I said something about CP and she said,  "Has someone told you he has CP?"  I looked all sheepish and admitted that no one had but no one would tell me either way.  She looked me straight in the eye and said, "Do you want to know?"  Well of course I do.  "Yes.  He most definitely does.  Are you okay with that?"  Yes.  I think I am...well, right at this moment I think I am.  Not that it changes anything.  It's a word, a diagnoses.  We are not changing our course of action, nothing about our ideas of his future really change...but it does SOUND scarier.  

  It really bothers me when doctors or therapists don't trust me to not freak out when they tell me things.  This last month it has happened a few times.  We met a new speech therapist who did his little tests and figured out where JT is in language.  He kept saying things like, "I would be crushed to find out my son was so far behind.  Are you sure you're okay?"  I was just thinking, "This isn't new news,  the other therapist told us he was at 12 months, you tell me he's at 10 1/2, it's not that different.  He is still my JT."  

   Maybe I am just not reacting yet.  Maybe they are right and I SHOULD be crushed and people SHOULD worry about telling me exactly what is going on because I will break under the pressure...but it doesn't feel like it.  Once a month, for a few days, I go nuts.  I am mad at everyone else for having "normal" kids with "normal" problems.  Those few days I am depressed and only think of myself and JT.  Then I figure out how to pull out of it and I only have a smattering of bad days for the rest of the month.  Normal?  I don't know.  But not telling a person that something is wrong with their child is certainly not helpful. 

Hi! I'm Lori.

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!

Marshall's History As Written For His Pediatrician

Read the post underneath this one first, then you will understand why I'm posting this and what it's about. I'm warning you- it's long. : )

Information for Marshall's doctor
Traumatic Birth
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).

NICU stay
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.

Eating Problems
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.

Occupational Therapy
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.

Sleep Problems
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.

Sorry I've Been MIA

These past few weeks have been super busy with me getting sick (still am) and Marshall not sleeping (yeah, we're so tired). There is so much to tell but I don't think I can get it all written down while Marshall is on the potty. He's a darling little demanding one.

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.

The "R" word

I have a part time part time job. I work at a large big box retailer. We ( my hubby and I) decided that for my sanity and all that I do with Tyler a "small" job would do me good. Plus, there is NO harm done in an extra 600 bucks coming in from somewhere!

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?

Painful Reminders

My poor little Breeito has an owwwww, as she says it. The other day Jeremy ran off to the bathroom and Emma was hot on his tail, until I reminded her that Jeremy goes potty with out her and that she needed to stay out until he was done. She came back as Bree was headed off, no doubt, to grab the plunger or a tube of toothpaste. Emma knew the rules and was playing with Bree taking a step in front of her direct path, sidestepping. I know that is probably confusing, but you all remember that older brother, uncle, cousin etc that would block your every step to tease you? Emma never touched Bree (that is important to know, she was within feet of her). Bree took a sidestep and lost her balance. I watched the whole thing in slow motion. She feel and hit her head on the little table they eat at. I really did not think she hit hard or that it was bad. Bree was wailing! Emma was crying because she thought it was her fault. We have explained to them that we have to be extra careful around Bree because she has a hard time walking as it is. Emma felt awful. I felt awful that Bree was crying so hard and Emma thought it was her fault. Anyway to make a long story even longer I picked Bree up to love her better while I was trying to tell Emma that it was okay and Bree was okay. Emma gave Bree a big hug and said "I am sooo sorry little Cheetio, it was just a big assident(that is how she says it). " When we were finally settled down I saw that Bree's eye was swollen shut and that there was bruising started. I put ice on it but I think my efforts were a little in vain. It was red and puffy all day. Today she woke up and it was even prettier-- purple and green. I don't think it was causing her much pain because she would poke it and say "owww" over and over again.
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!!!

The Big Day

Today was the "Big Day" of Mason's dental appointment. Everything went really well, and he is now getting back to his old self. Having him sedated was not fun, but it all worked out. I just wanted to share one cute little story.

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!