Change on the horizon

Change has surely come and it seems to be all at once, they are however good ones. Jed decided to go back to school. YAY! He starts tomorrow, and will be going into Network Systems Admin for his AS and then Information Systems and Cybersecurity. He knew for sure he couldn't handle going back to the U and taking a lot of classes he really didn't want to so we are taking a more direct route and he will be attending ITT Tech. I think this is the first time he has ever been excited about going back to school.

With him going back to school, he needed to have a work schedule change. Previously he was working 1:30 p.m. to 10 p.m. School will be at night so he put in for a work schedule change and we weren't sure if he was going to get it but he did and is now working 6 a.m. to 2:30 p.m. This is his first day doing so and he just text me. "This feels weird only being 10:50 and I'm over half way done with my shift. Usually I'm waking up right now. Not having my lunch break." I know this will be so great for us and give the kids more time to be with daddy. (the kids been up since 5:45 it is amazing what you can get done if you are up early.)

A word on Eli, he is doing well. Still not talking but he is very good at communicating to me what he wants. I think it has been very frustrating to him to not know how to tell me, but he has found a way that will work for the time being. That has been a huge blessing. He sometimes hits his head on the floor or the back of the highchair when he is mad. His PT has thought for a while that he may have sensory issues. And he very well may but as I am now figuring out better what he wants I am seeing that he does that when he is mad,frustrated or we are making him do something he doesn't want to. All and all he is still my little squish. There is a song call Blue eyes by Garden State that whenever I turn it on he puts his head on my shoulder and cuddles. I love it.



We are on our way to solving Emma's distaste for helping out. We could always just tell Ruby to pick things up and put them away, but that approach I think overwhelms Emma. We have found that if we give her a simple task like helping pull the dishes out of the dishwasher or cleaning the bathrooms, she does so much better. She has even helped Jessie get in on the fun. She is actually getting excited about it and I praise her over and over for the good job she did. I know it makes her feel good. We love it when we get cute cute clothes from cousin Chloe, Emma loves it too. Here she is working her espadrilles and skinny jeans.


As for me, since I am coming up on the year mark of breaking my leg this week I want so much to get some of the strength back in my leg that I have lost. I walk Ruby to and from school anyway, so my friend Andi and I have started running her there while she rides her bike (she is free of training wheels and loves it), and then we go for another 2 miles doing a run walk until we build up the stamina to run the whole thing. It has been good for me, and I love the company.




And since I know you are dying to know what the Romig's do on Sunday evenings I thought I would give you a small taste of what the girls call Karate. They love that Jed does this with them. I lack Jed's cat like reflexes so it is a good job position for him. If we had to switch places, I would consistently be sporting a paper bag on my head because I would probably take a senseless beating from the girls. :)

Finally ready to write about it.

I am sure in the past year there may have been confusion as to why I write about what a miracle my boy is and how lucky we have been and that we have hope and all of that other jazz. There is a big chunk missing out of my blog that should have been written but wasn't. Hopefully this fills in that gaps.

I have fought writing about this because it was so personal to me, and at the time I didn't know what the out come would be, and for me that was scary to put the possibilities out there. I was scared that people reading this would make judgments about Eli before they even knew him. I am such a mama bear. Here we are almost a year later and I am ready to write.

In October of last year, we noticed that Eli would do something very unusual. When he would sit his body would jack knife forward repetitively every 15 seconds for 5 minute sets, five or six times a day. He liked to rock so we thought nothing of it for a little while.

One evening we were together with family and friends, and he started doing it and someone was very concerned and urged us to contact Eli's neurologist. We informed them that we had already done so, and we were just waiting for them to get back to us.

The neurology dept. got back to us and recommended upping his medication to see if that would help. We did and saw no results. Again this family friend urged us to take a video of him and send it to his neurologist. I wish I had the video to post, in case it could have helped anyone else know what to look for. I think we deleted the video because it was just so sad to watch this happen to him.

We did so and within a week, we received a call personally from his neurologist(normally it is a nurse we speak with.) she told us she thought it was infantile spasms and that we needed to get him in for an EEG to be certain. We got it scheduled and indeed the results came back as infantile spasms. We were devastated after doing the research on it. Doing online searches led us to reading things like this:

Infantile spasms is one of the “catastrophic childhood epilepsies” because of the difficulty in controlling seizures and the association with mental retardation. However, early recognition, a careful diagnostic evaluation, and proper treatment may allow some children to attain seizure control and to achieve a normal, or at least much improved, level of development.

Infantile spasms is associated with a significant risk of mortality and morbidity. Riikonen has followed 214 infantile spasms patients for 20–35 years and has accumulated the best long-term follow-up studies of these patients (4, 24). In her series, nearly one third of the patients died during the follow-up period, many in the first 3 years of life. Eight of the 24 patients who died by age 3 died of complications of therapy with ACTH. (Those who treat large numbers of infantile spasm patients do not see such a high mortality rate, which largely is due to improved medical capabilities.) Of the 147 surviving patients, 25 (17%) had a favorable developmental outcome with an IQ of 85 or greater. Eleven others were in the dull–normal range, with an IQ of 68–84. Thus, of the 214 patients diagnosed with infantile spasms, 31% died, 45% were retarded, but 24% had a reasonably favorable outcome. The outcome is dependent on two major factors. First and foremost is the underlying etiology. Some etiologies will lead to death or mental retardation, whether or not the patient developed infantile spasms. However, children with cryptogenic infantile spasms or infantile spasms that is due to remediable etiologies, such as focal cortical dysplasia, may have a normal or near normal developmental outcome if seizures are controlled. Thus, the goal of therapy is to achieve control as soon as possible, especially for children who may have the potential for normal intellectual development.

Can you imagine reading and knowing that your child had the possibility of being retarded because of a health problem they had when they seem so normal and healthy? I don't think I have ever been filled with more fear in any time of my life than during this point.

Again it was Eli's neurologist who called us and gave us all the details and told us what needed to be done, and got an appointment within the next 5 days. That is super irregular to get such a fast appt. but that just tells you how serious it is.

These are e-mails I wrote to family to make them aware of what was happening. I wish I would have written more at the time it was happening, but writing about it made it all the more real and truth be told I just wanted to block it out.

We just got a call back from Eli’s Dr. The results from his EEG came back abnormal. He has been diagnosed with Infantile spasms which is a form of seizure. We have an appointment with his Dr. on Tuesday, she wants to hopefully treat them with a series of steroid injections. She said that getting it all set up is quite a process and that we would talk more about what this means for him and us at the appointment next week.

Thank you for all of your love and support,

Jed and Ash

At Eli’s appointment we talked about infantile spasms, they can have life altering effects but are contingent on what is causing them. Some of which include developmental regression and or mental retardation. (We are hopeful since we have caught it early and he is receiving rapid treatment) The most essential thing for us to do is to stop the seizures from occurring. He will be doing a treatment of ACTH which is a steroid for 2 weeks. This is the gold standard in hopefully treating them. We have Home Health coming into to teach us how to administer his shot intramuscularly in his thigh and take his blood pressure. He will take a shot once a day and we will be taking his BP twice a day. The steroid has downsides while he is on the medication, he can gain weight rapidly, possible high blood pressure, be really irritable, have night sweats, and his immune system will be weakened for the period he is on his treatment and a little bit after. So we have to be vigilant with hand washing and careful with being in large crowds. He will be most susceptible to people that have had or have recently been given the chicken pox vaccine. So this is what we have to be most careful with, as it could cause a serious infection for him. We discussed Thanksgiving with the nurse at Primary Childrens and she said that it is fine for us to still host we just need to be careful to not pass him around to much and make sure people wash before they touch him.

His nurse came last night and did some teaching with us and Jed administered his shot. Jed did really well. I made him do it because I knew I couldn’t. The nurse was impressed with how well he handled it. After his treatment we will have another EEG done to make sure the medication has done it’s job which is to stop the chaotic brainwave activity. It is also important for us to see if we can figure out what is causing it. There is however a possibility that we may never find out. But we will start with the base ruling out tests first of which will be a spinal tap and if they can’t find anything there I think the next step is a metabolic panel.

When we went in they told us that Eli is a high priority patient and we were given a number to call to keep us in close contact if we need something. We feel like he is receiving the best care possible. His medication isn’t always the easiest to get but gratefully there was a pharmacy return and they had it in stock, so that we could give him his treatment immediately as opposed to waiting. As I left Eli’s appointment yesterday I felt peace. I was very anxious before.

Much love,

Jed, Ashley and family

At the end of Eli's ACTH treatment, he had another EEG to see it the medication had stopped the Infantile Spasms. We were so anxious. I can't even begin so say. We received the best news ever that the medication did what it was supposed to. This was right before Thanksgiving and my heart was filled with gratitude for so many things. As Eli reached the end of his treatment he was smiling and laughing again. (He stopped doing this when the infantile spasms started.) It was such a miracle to have our little boy back.

We did 2 out of the 3 tests they wanted us to do and they both came back with no answers. We so wanted to do the genetic testing to see if that would give us the answers we needed. Our insurance informed us that they refused to pay for it. I hope at some point that it will be an option for us.

To our family friend who urged and encouraged us to be persistent with the neurology dept and send in the video, I will be forever grateful to you. I don't know if you read our blog, but I want to thank you for helping us save our son from a terrible fate. You knew what needed to be done and helped us to know what to do. I will love you forever for it.

After the treatment, Bubba put on a pretty decent amount of weight. 3 lbs. is a lot in two weeks time. He went from this to this. He has thinned out a lot since then, and people always tell me how big he is and I always smile and say, "No this is skinny for him."

We are so LUCKY. I have read some blogs of other children who have had IS and it has been such a battle for them. On November 22 of 2011 Eli will have been IS seizure free for a year. We feel so blessed.

We love, love, love this boy so much.

Notice anything wrong?

I am sure that many years from now, if Emma hated being the middle child this picture that I have posted will be a testament to the fact that middle children get the shaft. As for myself I loved being in the middle. I felt like I had the best of both world and gained very beneficial skills I wouldn't have otherwise.

For the record. YES I love my middle child Miss Emma. And NO I did not intentionally make the mistake you will see below. Just chalk it up to tons of pictures to pick from and having to have certain photos fit a format.

My journal came UPS and as I pulled it out of the package I was thrilled until Emma got a sad look and said "Hey!" She noticed immediately and my remorse inevitably followed.

Emma's picture will be promptly placed in the cover of my new journal simply because I love her so.

A few tidbits about our Emma as of late:

-Emma has increased her title. A few months ago she preferred to be called princess and now she has made the upgrade to Princess Bunny Bear. (A name we came up with for a stuffed bear) She decided it would be a good fit.

-Emma hates to clean, there have been many a time that I have asked her to pick up her room, to which, she gets all slumpish and says in a whiny voice, "I'm tired." and then while she is supposedly picking up she has really tucked herself into her bed and is taking a nap. Sometimes they last for 3 hours. Sometimes she locks the door to keep me from pestering her. When Jed and I would discuss her in private, we would refer to her as Lazy T. Lazerton. At which point we would giggle. We are wicked aren't we?

-Her favorite movie is Sleeping Beauty.

-She is obsessed with the disney princess polly pockets my mom has at her house. They are the first thing she asks for upon arrival at Grandma's.

-I had a very sad day on Saturday and Emma sat by me on the kitchen floor while I cried and took her small little finger and would catch each little tear as it would fall. With a very compassionate look in her eyes and a quiet reassuring voice. Oh how I love this little one.

- She likes to help me pick cherry tomatoes from the garden but refuses to eat them.

Kindergarten arrives

The day has arrived! Ruby's excitement has infected us all. She woke up at 12 a.m. and asked Jed if it was morning or night. She was sent back to bed and woke me up at 6 a.m and climbed in to bed with us and then kept asking what time it was. I sent her to have some quality time with PBS so I could have another 30 minutes of quality time with my eyelids.

She had a great day and had enough to tell me about to fill in the time on the way home from school. The best part of her kindergarten tales are this. "Our teacher told us about some books they were sending home with us to make money for the school. I told my teacher no, I don't want one, because we were saving money for a vacation." :)

A schedule will be good for all of us.

Ruby in real life

I am waiting for my journal to come in the mail but I didn't want to forget these two important stories to write in the mean time.

Last Friday I was making dinner, and the girls were playing in the kitchen. I could hear their voices, along with jumping and laughing. Right as I was removing a pot of boiling water from the stove I was about two words into telling the girls to stay back, right when ruby and I collided and water spilled from the pot. It splashed into her braid and down her back. She was screaming and I was in a frenzy.
My first thoughts were to put her in the sink but realized it wouldn't work well space wise. I rushed her to the bathroom, taking her things off on the way so I could get her into a tub of cold water. I wasn't sure how badly she was burned. I got the water running and set her in the tub. I hurried back to the kitchen to make sure Emma hadn't touched the pot. She knew their was pasta in there and it is always such a great temptation for her to pick. All was fine. I drained the pasta and combined it with the sauce and spent the remainder of the time back and forth feeding Emma and Eli and then between bites checking on Ruby. She wasn't digging the cold water so I helped her out and gently dried her off careful not to touch the burn that was an angry red on her left shoulder blade.
I wrapped and icepack and placed it in her robe. She climbed on the bed and I tucked her in and fed her dinner by the spoonful. She was full and just wanted to rest, 5 minutes later she was asleep. Knowing there were dishes to be done and a sauce covered boy in the high chair, I reported to the kitchen for duty.
Later that evening, when Ruby woke up I asked her how she was doing. She responded as such:

"Better. When you placed me in the tub and went back to the kitchen, I said a prayer that Heavenly Father would make the burn stop hurting and in a few minutes it didn't hurt as badly."

On another occasion right before dinner, Ruby saw some neighbors out playing basketball. She poked her head out the sliding glass door and made her inquiry as to what they were doing. One of the children responded unkindly to her and I asked her to come in. When she came inside, I was feeling very mama bear,

Me: Ruby don't even talk to that boy, he is always so mean to you. Just ignore him.
Ruby: Mom, were are supposed to love everyone. Even when they are mean to us. So I am going to still talk to him even if he is mean.
Me:Where did you learn that? (I was feeling very put in my place.)
Ruby: In primary.

My great finds

We had some neighbors that moved a while ago and then they did a moving sale. There were also a few other sales happening. I called my bestie Steph and we went together. I found items that I loved. But I think, my grand prize over all were these great costumes. They were seriously $2 a piece. I saw them and I snatched them up. The girls were thrilled! They have had so much fun playing with them, and they love getting together with their friend MaKadin and playing Star Wars.

I love these pictures but I think what is the best is that you can still see feminine touches here and there, check out the pink toenails and fingernails.







Ruby also demonstrated some of her stealthy batman moves. What a treat that was. I have to say though, my favorite of the whole weekend was putting on the mask myself and getting close to Eli and making the Darth Vader breathing sounds. I would take the mask off and he would take it put it on his face and make a huffy little breathing sound. It was one of the cutest things I have seen in quite a while.

Look at me!

Yep! Eli is up and on the move! He started walking at 15 1/2 months, and now he is loosing the drunken sailor swagger he started off with. I love watching him do the things he wants to, he is so determined.

He has only said one word for a long time, and I was jumping up and down and so excited because he started making a new sound "baba" when he was 15 months old. He has added two more to the repertoire "guh" and I heard him say "dada" once. All of these little steps are so huge for him. It get so happy when he meets new goals we have set for him and are working on. It is so exciting for me. Along with his physical therapist that comes to see him, we now have an early childhood developmental specialist coming to see him once a month as well. She has been so helpful and in July when she came to visit for the second time I was very discouraged. She came to see us again in August and I had so much to tell her about the progress he made. I was a proud mama. He is also signing "more" and we are currently working on "eat" and "all done." He loves to be outside, pop bubbles, and swim.

He is such a special boy. I know I say that a lot, but he has helped me appreciate what a wonder these little spirits are. These types of achievements came so easy for my girls and I just expected it from them. Everything he has accomplished has taken determination and lots of falling down and sometimes frustration for him and me. He is so happy! How blessed we are to have him. I never anticipated to have a child with health problems but I know he was sent to us for a purpose and I wouldn't change how it has all turned out. I just love him. One person who I love very much told me once that looking into his eyes is like looking into eternity. For me when I look into his little face, I see a little boy who has such a strong spirit and I feel like he knows so much more than he can say. In short I am grateful.