Sunday, November 30, 2008

Snowy Sunday

Gracie had a pretty good day today. She was a little more needy today and had a great appetite. She woke up at 3:00 a.m. and 6:30 a.m. demanding to be fed. Once fed, she went right back to sleep. We had smiles today, but not as many as yesterday. She wanted to be held and bounced more today as well. I know this is the steroids at work, they cause her to be quite restless. The number of spasms today was reduced from yesterday as well, but we still saw plenty of them. Thankfully, they weren't as strong as yesterdays. We did not do an injection tonight, so I'm a little nervous as to what tomorrow will bring.

Gracie did enjoy seeing the snow outside and watching daddy shovel from the window.

Lisa, Jeff, & Gracie

Saturday, November 29, 2008

Our Happy Girl Returned Today

We have reduced Gracie's steroid injections to every other day. Last night was the first day she didn't have one. We can tell the difference in her mood. She was a very happy girl today, her smiley, social personality started to return today. She played, she laughed, she sang, and she crawled about the living room playing with us and her toys. She even took two 30 minute naps. Unfortunately, the spasms returned with a vengeance as well. She had so many of them today that we lost count and some of them were so strong. Tonight we give her another injection, it will be interesting to see if that makes a difference in the number of spasms tomorrow. We need the Vigabatrin (new meds) to arrive from Canada quickly!

Our neurologist witnessed one of Gracie's spasms yesterday and commented how unusual it was that Gracie smiles after them. Most kids cry and fuss. The neurologist truly looks at Gracie as a unique individual and we really like that about her.

We had Gracie's weight and blood pressure checked today. She actually lost a couple of ounces. and her blood pressure was good as well. The nurse that took her blood pressure was awesome with her. Gracie has taken to crying and screaming when she gets her blood pressure taken, this nurse really worked with her to make her comfortable before she even began. It worked wonders. I am so thankful for all the wonderful nurses, physicians, clinical assistants, and other healthcare specialists that we have encountered. We are blessed.

Lisa, Jeff, and Gracie

Friday, November 28, 2008

EEG Results and Next Plan of Action

Gracie had an EEG this morning to see how well the Acthar (ACTH) steriod medication was working to eliminate the infantile spasms. Our pediatric neurologist read the EEG immediately and met with us directly after. We got good news and bad news. The good news was that Gracie's EEG did show some improvement. The bad news is that there was not enough improvement and it was felt the ACTH won't give us the results we need. Over the next month we will gradually decrease the ACTH injections and eventually we stop those meds. We will be putting Gracie on a new medication call Vigabatrin. It is not FDA approved in the United States, so we will need to have it imported from Canada. Since it is not FDA approved, our insurance won't cover it, so it will be out of pocket, but a small price to pay for Gracie's health. Like most medicines, this one will have some possible side effects. It will make her sleepy and perhaps a bit dizzy as well. It can also be toxic to the eye and can cause irreversible damage to peripheral vision if on it long-term, so we will be watching Gracie's vision very carefully and will have that monitored at Mayo Clinic as well.

We did get a confirmation through DNA testing that Gracie has Sotos Syndrome. We'll learn more about this later next week.

Thank you for the continued prayers.

Lisa, Jeff, & Gracie

Wednesday, November 26, 2008

Drat - More Spasms

Gracie had a lot of spasms today, I would estimate about 30. She didn't feel great today either. She wanted to be held most of the day and was very tired and restless. Due to Gracie's compromised immune system, she takes a very strong antibiotic twice a day on Mondays, Wednesdays, and Fridays. She absolutely hates taking it, even though it smells grape, and it makes her stomach upset. So I think that was a good part of why she wasn't at her best today.

She did walk a little today, but wanted to be held most of the day. We did take a stroller ride, but she wanted to lay back for it. Gracie usually hates laying back in her stroller, so I think laying must have felt good on her tummy.

The funny story of the day happened this morning. I had Gracie's pants off and had her sitting in front of me to clip her toenails. She hates having her toenails clipped and usually fidgets the whole time, pulling her foot away. Today it went extremely smoothly and I was just clipping away trying to get done quickly before her mood changed. I should have realized something was up. When I was all done, I noticed her chewing on something. Knowing there was no food around, I put my finger in her mouth only to pull out a SpongeBob bandaid. She had picked it off of her leg from her injection the night before and popped it into her mouth. No wonder she was so good, she had a mission.

Gracie had a nasty fall today. She was standing at the couch and lost her balance and fell backwards and hit her head on the floor. The sad part was I was right there, I just wasn't quick enough. I know it hurt and she kept holding her head. Poor little pumpkin. This makes me realize the decision to get her a helmet is the right decision.

Wishing all of you a very blessed and happy Thanksgiving. We are thankful for all the love, support, and prayers we have been receiving.

Thank you,
Lisa, Jeff, and Gracie

Tuesday, November 25, 2008

Walk, Walk, Walk

Gracie had her ups and downs today. She was very tired this morning, yet very restless. She did take a 45 minute nap while I was rocking her. She had about 20 spasms today, so we seem to be about the same as the last couple of days.

Gracie was a mover and a shaker today. Despite not always feeling wonderful, she decided today was the day to work on walking. She walked from our TV stand in the living room to the refrigerator in our kitchen. She stood there for a while and I coaxed her to walk to me and we ended up at the dishwasher. I would guess about 20 + steps in all. She walks very slowly and deliberately as she seems to understand that she still has trouble with balance. She is able to catch herself at times when she starts falling backwards, so that is a success as well. I think we are going to need to get her helmet sooner rather than later.

It was a beautiful sunny day, so I decided a stroller ride was in order. Instead of using the umbroller, which seems to be confining for Gracie when she is all bundled up in her snowsuit, I decide to get the big stroller from the trunk of my car in our attached garage. Whenever I leave Gracie in a room by herself for a few minutes, I tell her I'll be right back and not to get into any trouble. She always smiles at this. Today when I returned (I wasn't gone more than a minute or two), she had pulled herself up, wedged herself between a rocking chair and a magazine stand and was holding onto a floor lamp. She had a smile a mile wide when I arrived at the scene, that was until the lamp and her started to fall over. Mommy to the rescue on that one. The stroller ride was enjoyed quite a bit today. She even started to sing and kick her legs.

Once again, she was a very hungry girl. I can't seem to keep her filled up. I know this is the steroids at work.

This evening Gracie did more walking downstairs and is very proud of herself, of course mommy and daddy just beam at her accomplishments as well. The successes seem twice as sweet when we see her struggle for every one of them.

We continue to pray for a miraculous recovery. The EEG on Friday should give us an idea of where we are and next steps. We appreciate all the prayers and ask that you continue to keep Gracie in your prayers.

Lisa & The Family

Monday, November 24, 2008

Happy Monday

Gracie had a very good day today. Her mood was much more mellow for most of the day than it has been in awhile. I got alot of smiles and she had less than 20 spasms today. She even took about a 20 - 30 minute nap.

I took Gracie out for a stroller ride after lunch, but she didn't seem to enjoy it as much today. She kept wanting out of the stroller. The sun was out, but the wind was quite cold, so that may have been the problem.

We took Gracie in for a weight and blood pressure check this evening. She gained a 1/2 lb. and is now 29-1/2 lbs. Her blood pressure was higher than it has been, but she cried the whole time, so we don't feel it was accurate. She pretty much had a meltdown when they put the cuff on her and really didn't settle down after that. She screamed most of the way home. A nice meal helped to settle her down once we got home.

God Bless,
Lisa and the Fam

Sunday, November 23, 2008

Sunny Sunday

I am pleased to report that Gracie had fewer spasms today than she has had (less than 20). I hope, hope, hope this is a sign of good things to come. She had a very rough morning. She had a hard time waking up and once awake nothing was quite right. I spent the morning holding and bouncing her. She just sounded like she was constantly uncomfortable, but I'm not sure what hurt. If only she could tell me.

Gracie ate a good lunch and eating is one of her favorite things these days. She usually has big smiles when she is filling her tummy. After lunch, Jeff and I bundled her up and put her in the stroller for an extra long walk. It was a beautiful day (in the 40's) and fresh air felt good on all of our cheeks. We even heard laughter come from our beautiful little girl as Jeff pushed the stroller at a fast speed down the hill. She loves living on the wild side!

Gracie couldn't settle down at all to take a nap this afternoon. Oh I take that back, she did take a 2 minute nap. I'm not sure how refreshing that was though.

Auntie Kathy came to visit Gracie this evening and joined us for supper. We made one of Gracie's favorites - Bubble Pizza -- she had lots of smiles. After supper it was time for her injection and I could not get all the bubbles of air out. I tried for over a half hour. Our neighbor Bridget, a nurse, came to my rescue. If you are reading this Bridget -- thank you so much for taking time away from your family to help us out.

Thanks to all of you praying for Gracie. I know many of you are struggling through medical issues and other challenges. Please know you are in our prayers too.

Lisa and the Family

Saturday, November 22, 2008

A Stroller Ride in the Snow

We had a lazy morning and all slept in til 7:30 a.m. this morning. It felt great. When we looked out the window the outdoors was covered with a light blanket of snow. The sun shone brightly this afternoon and the temps were in the 30's, so I bundled Gracie up for a stroller ride in the snow. Once again, all was right with the world. She was quite fussy before we left, but the moment she felt the cool outdoor air hit her face her smile appeared and didn't leave her face until we were back indoors again.

She had quite a few spasms this morning, very few this afternoon, and this evening we are seeing a few more. Gracie had a pretty happy afternoon, took a 20 minute nap and another 6 minute nap. She stills gets tired easily, the steroids hype her up so she can't sleep much during the day, so she just takes little rests on mommy or daddy's shoulder.

We are seeing Gracie's attitude come out more and more, as she has started to scream at the top of her lungs if something isn't quite right. This is a new one for us, she's always been a very independent girl with her own opinions, but the tantrums were far and few between. With all she has been going through, I really can't blame her, I would want to scream too.

Gracie continues to have quite the appetite. She is getting picky on what she wants when though. This afternoon I offered her a graham cracker, she kept making her "I'm hungry" sound, but refused the cracker. There were pureed peaches close by and I finally figured out that was what she wanted. She also refused her blueberry waffle this morning, but a cinnamon roll hit the spot.

We're hoping for another nice day tomorrow.

Lisa & The Fam

Friday, November 21, 2008

Bummer -- More Spasms

Yesterday Gracie's spasms had decreased. Not quite true today. She had 20 before 9:30 a.m. This prompted a call to our pediatric neurologist as usually the steroid she is on makes them go away in about a week. Our plan is to continue with the steroid until next Friday. Gracie has an EEG on that day and immediately after we meet with our pediatric neurologist for results and to figure out where to go next. We have a few different options, one is we triple her epilepsy meds, the second is to order a different drug from Canada (not available in the U.S), but it can cause damage to peripheral vision, and third is to put her on a ketagenic diet - 75% of her food intake would be fat, 25% would be protein and carbs. As I understand it, we would need to be on this for about 2 years.

Auntie Arlene came to visit today. Gracie and Arlene played and Gracie had lots of smiles, she even danced and took a few steps for her. I think she was happy to have someone other than mom to play with. She fought sleep all day. She finally took a 30 minute nap at 4 p.m.

Gracie is starting to fight her injections. Can't blame her. I imagine her thighs are getting sore from all the pokes. Next is bath time. I'm hoping that will cheer her up. She loves to splash, splash, splash.

Lisa & The Fam

Thursday, November 20, 2008

Too Many Pokes!

Today we decreased Gracie's steroid injection to just one a day and we are doing it in the evening, so she was able to sleep in this morning. She had quite a good morning, even played on her own with her toys for a little while. This was a good sign that she was feeling a little better. We visited daycare for about 30 minutes and she enjoyed that, but screamed most of the way home as she was getting hungry and tired. This afternoon was not so good, just wanted to be held and bounced all afternoon. Couldn't quite get comfortable.

Tonight we had her blood pressure and weight checked. Her blood pressure was still lower than what it was in the hospital and she gained about a 1/2 lb. Then we had to have her blood drawn. Well she is a little sick of pokes and was not happy about this. It took quite a while to calm her down afterward. After that we came home, ate, and then had to do her injection. Tonight she did not want any part of it. It took us awhile to calm her down after that too. Jeff is the one that holds her, while I do the injection. I guess Jeff is the big "meanie" in her mind, as she didn't want anything to do with him for awhile afterward. They did make up and become friends again before bedtime.

Our good news of the day is that her spasms lessened. We saw around 20 of them today...we usually see about 40 a day. I hope this is a sign of good things to come. Please keep those prayers coming!

All our love,
Lisa, Jeff, & Gracie

Wednesday, November 19, 2008

The Dance and The Walk

Last night (Tuesday) Jeff brought home a DVD from a musical performance that he had worked the previous day. The musician was a folksy, reggaeish kind of guy and was really good (and this is usually not my kind of music) and Gracie quite enjoyed it as well. She was standing by the TV and all of a sudden she started dancing. She loves music...I see music in her future.

Today (Wed) Auntie Sheila came for a visit and took care of Gracie so I could run an errand. Gracie did quite well. She is either very happy or very unhappy, there really isn't much middle ground. I understand she did chew Sheila out with her jabbering. We're not quite sure for what though. The visit must have tired her out. She took a 2 hour and 40 minute nap. Virtually unheard of these days. Her naps have been more in the 5 to 15 minute range.

Evening seems to be Gracie's content time the last couple of days. This also means she is trying new things. Tonight she took five steps all by herself from the TV stand to her V-tech walking/learning toy. Each step was very deliberate and stable. I was so proud.

She continues to have many spasms through the day which is worrisome, but all of the progress she continues to make with her motor skills gives me much optimism.

Thanks for all the good wishes and prayers being sent our way. We know they are giving us strength and we appreciate each and every one of them.

God Bless You All.

Lisa & the Fam

Tuesday, November 18, 2008

A Stroller Ride

Gracie is napping, so thought I would take a few minutes to give an update. Gracie awoke at 5:00 a.m. hungry as could be. We couldn't get her bottle to her fast enough. She had a rough morning, lots of spasms, wasn't quite comfortable, and the only thing that really helped was for me to walk and bounce with her. She has liked this since she was a colicy infant. It's very calming to her and I'm building some massive arm muscles. Ha!

After lunch I called Jeff to get a reality check on whether my idea to take her outdoors for a stroller ride was really such a good idea. She loves the outdoors, but the high today is 31 degrees. BRRRR. The sun is nice and bright though and not too much wind. Jeff agreed that a little fresh air might do her good. I bundled her up in her snowsuit, hat, and she didn't even mind the mittens. I put her in her umbroller (she likes this better than her big stroller for walks) and with all that bundling she barely fit in. From the moment we hit the outdoors Gracie had a smile on her face a mile wide. She was kicking her feet in happiness and all was right with the world. We were out for about 45 minutes and she enjoyed every one of those minutes.

All the fresh air tired her out as well. Since the meds, the only way she will nap is with me holding her, well she is now on her bedroom floor snoozing. It's amazing what a change of scenery and fresh air will do.

Monday, November 17, 2008

First Blood Pressure & Weight Check

A quick update to let you know Gracie had her first blood pressure and weight check at the clinic this evening. She has gained 1-1/2 pounds and is now 29 lbs. I think she gained it all in her little cheekies. Her blood pressure was good, even a little lower than in the hospital.

Gracie had a pretty good morning, but an uncomfortable afternoon. Her physical therapist stopped by, but Gracie was not feeling up to any PT so we just talked a bit instead. Gracie did show her how her balance while standing is improving. We talked about getting Gracie a helmet for when she starts to walk, as I think it won't be that long and I can foresee lots of falls as she continues to perfect her balance. Gracie did take a number of steps for daddy tonight. The incentive...the TV set, she loves to stand right next to it.

The Diagnosis - Infantile Spasms

Family & Friends,

We've had a number of medical challenges with Gracie recently. The diagnosis of epilepsy, a clinical diagnosis of Sotos Syndrome (we are still awaiting the genetic tests to come back for confirmation), and our latest stay in the hospital has given us the diagnosis of Infantile Spasms. This is a seizure disorder if left unchecked can cause permanent brain damage and even death. We feel very fortunate to have caught this very early...we believe on day 2. We are treating this very aggressively with a steroid injection therapy. Our pediatric neurologist has indicated this drug is successful about 80% of the time. We aren't quite sure of the definition of successful at this point. We meet with the neurologist again and will get more information. I'm giving Gracie injections twice a day for starters, then it tapers down to once a day and then once every other day. This is a 12 week course of meds. The meds are very strong and can cause high blood pressure, liver damage, a compromised immune system, and stomach issues. Therefore we have appointments twice a week to check Gracies stats...chemistry, blood pressure, weight, etc. We also have her taking a number of other meds to assist with all of this. Gracie is also starting to puff up a bit from the steroids. We're told it will get worse before it gets better.

We have created this blogsite to keep family and friends updated on Gracie's progress. We ask for your prayers that the treatment plan be a success. Gracie's been a trooper throughout. She now preps herself for the injections by sticking her thumb in her mouth, grabbing her blanket, and wincing in preparation. Mommy still cries after each one, but I'm getting braver too! Daddy will take his turn with the injections once mommy has it down to a science and can teach him.

Gracie is much more restless and irritable, I'm told this is a side effect of the steroids. Her tummy gives her more trouble, and she has quite the appetite. Her smiles are a little harder to come by, but she still has them. She still has her sense of humor intact as well. Today I found her on the floor, laying perfectly still, eyes closed, holding up a bottle of water that was slowly drip, drip, dripping on her face. When I asked her what she was doing, I was rewarded with a huge smile. "Just playing, Mom!"

I'm off work to be with Gracie for a while. We'll see how it goes and if she starts to feel better once we reduce the steroid treatment, then she will go back to daycare. We're just taking it a day at a time.

We appreciate all of the good wishes we have received and appreciate all of the prayers - please keep them coming. We need them to beat this and our plan IS to beat this.

All our love,
Lisa, Jeff, and Gracie