Flubber

For one of Marlee Anne's science projects she made Flubber. It's really such an amazing thing.

Lots of Love!

Yes I know it's actually Locks of Love but Marlee Anne calls it Lots of Love and that's just fine with me cause she did it because she has Lots of Love to give. She has been talking about donated her hair to Locks of Love for several years now. Well actually since she saw pictures of Mary Elizabeth and Michala both doing it on their Make A Wish trips at the Disney Barber Shop. Yesterday Marlee Anne said mommie would you please cut my hair for Lots of Love. I explained to her how much we needed to be able to send it. She said ok let's do it. I offered to take her some where to get it cut and make a big deal out of it. She said no mam' you just cut it. You can see by the look on her face how very proud she is of it.

Mike's karate days

Mike in his younger days when he and Blake took karate together.

Update on Abe

Abe has started having seizures every time he wakes up now. So any time he is awake that is what he is doing. We have started giving him Ativan around the clock and Diastat still when needed. We have decided to try Orapred (prednisolone). He will get high doses of this steriod for 7 days in hopes of getting control over his infantile spasms. Side effects are throwing up and irritability because of the high doses. Usually you have to wean from it but since Abe is on Cortef daily we will just go back to his regular dose. We will take him to see Mo and Dr. Holt next Wednesday to discuss our next move with him.

My sweet baby boy!!!

All I can say is thank goodness for digital. If not I would be in so much trouble for taking so many pictures. I am going to send a few and will post more on our blog when I have a chance.

Yesterday Mike took Michala and Marlee Anne to Jackson's birthday party. We had all planned to go and as much as I needed and wanted to go be with all them I knew I needed to keep Abe home. So I took pictures instead.

The infantile spasms are not going to win this battle. They are trying hard but when I see this precious smile from Abe I know that he will keep fighting back. The pictures of him with the sunglasses are from the goody bag he got from Jackson's party. Marlee Anne came home and put them right on him. Not sure why she chose purple cause those were supposed to be Michala's. Abe has blue ones.

More hockey pictures

OK I couldn't resist posting these. Look at the first picture and see how sweet Michala is with her arm around her sister. Then look at the second one to see how much work it took for Marlee Anne to get her that way. LOL!!! You gotta laugh and love it!!! She was bound and determined to get a good picture.

Daddy's Little Punkin'

Marlee Anne took pictures of Abe the other day in his Daddy's little punkin outfit. She wanted me to share them with ya'll.

Happy Birthday Sam!!!

We got a visit from Sam the other day. He and Abe were in the NICU together. When they told us Sam weighs 13 lbs I guess Abe was listening because Friday in the ER Abe weighed 13.2. We had a wonderful visit with them. I even got to snuggle with Sam while Shannon snuggled with Abe. Happy Birthday Sam! We love you!!!

Hockey

Michala got tickets to the hockey from Camp Sunshine. She, Mike, Marlee Anne and Korky went the other night and had a blast. Mary Elizabeth let Marlee Anne wear her hockey jersey and Michala wore hers so they were styling. Mike said Michala had the best time. He said she was dancing and clapping everytime they played music. Thanks Camp Sunshine for a great night!!!

Daddy's little girl!

Mike has a pair of camo pants that he wears to work in the yard sometimes. Marlee Anne has always wanted a pair. Well he bought her a pair the other day and she is so proud. I had to take pictures cause she wanted everyone to see them.

Things that make us laugh

OK ya'll have to understand it's been a long weekend. Not all of you will think this is funny but some of you will totally relate. I have always said that everyone has trials and tribulations, ours are just different than most of our friends. You see Mary Elizabeth is a teenager with different stuggles than the teenagers of our friends. Still they have struggles and different challenges too. They are just dealing with the typical teenage stuff.

Well this morning the phone rings and the guy wants to speak to Mr. or Mrs. Hopkins. This is Mrs. Hopkins. Hi Mrs. Hopkins, your teenager (no name) has expressed interest in the SAT study program that we have to offer and I would love to go over that with you. You know you can just tell the tone of a telemarketer. So I had to laugh out loud. I feel sorry for the guy cause I know I caught him off guard. I said no my teenager did not express interest in the SAT study program because she is handicapped and functions at about a 6 month old level. He was very quite for a second and then said oh I am sorry. I am still laughing over this one. Just had to share for those of you that can see the comedy in this one.

Yes I could have gotten all down and upset thinking oh I wish she was taking the SAT. You know what, each day I realize more and more that God made Mary Elizabeth perfect. She is the closest person I know to that of what God wants and expects of us. She never ask for anything. She will never hurt you or let you down in any way. She loves unconditionally. She wakes up in the morning knowing without a doubt that she will be taken care of. Complete trust without question. WOW if I could be that way! No cares in the world. She goes to bed at night with no fear or worries knowing no matter what God is with her. Oh and she is great at keeping secrets! Ya'll hope! Those of you that tell her your secrets are gonna be shocked one day when she starts talking. LOL!!! No she would probably still never tell.

We're home!

We had to take Abe to Egleston ER yesterday. A couple of his doctors were concerned about him still running a fever and having so many seizures. I walked into the very crowded ER with him. They took us right back to the trauma room (because he was having a seizure) and got him hooked up. They gave him motrin pretty quick and that seemed to calm him down some. Well that and the wonderful nurse rubbing his belly. Oh and since this email is quickly becoming a God thing and how he went ahead and put people where they needed to be I have to share about the nurse typing his info. She also works up on the 5th floor - neuro, knows Dr. Holt and was familiar with Vigabatrin. That was a blessing. Everything was pretty much the same since his last visit except for the new meds we had added.

They wanted to get an IV to run antibiotics. We warned them he was a hard stick. They wanted to get blood for labs and we told him he was stingy with his blood. The first nurse looked and looked and looked. She finally said his head would be the best spot but she would be glad to get someone else to look. We said yes because we would like to save his head as the last resort. He has some really good veins there that they use most of the time and we don't want to wear them out. The second nurse came in and used the light. She found one right away. They got the blood out of that sight and I must say a good amount fairly quick. Abe did good! He was making us look like liars but that was ok with us. She found another spot really quick and got the IV in.

They got the xray done. So now we just had to wait for results. I headed down to the cafeteria to get some delicious food. There was nothing so I opted for a grilled ham & cheese from the grill. Thankfully my guy was there cooking so my sandwich was actually very good. When I got back Mike went. We were laughing in the room at our wonderfully expensive Friday night date.

Around 9:30 they came to tell us they needed another CBC. Thankfully they took it from his foot, which he hated worse than the blood draw or the IV. I was just glad he didn't have to have another needle stick. His feet are still so tender. About 10 they came in with the results. Blood work looked great! Oh and they tested him for RSV which was negative!!! YEAH!!! His chest xray report said no remarkable changes. It did say that the top right and lower left look to be collasped and recovering from something.

They were going to run the rochephin and his IV was very positional. After about 4 tries she said I really hate to have to give him a shot. I hated that too cause his poor legs are so bad from the shots he gets every night. I finally held him and got him where I could hold his arm to get the med to go in. It ran over 30 minutes and we were headed home. A night that was definitely blessed by God and one that left us with a peace knowing his pneumonia wasn't getting worse.

Update on Abe

Last night I had to put Abe's feeding tube back in to help him get over the pneumonia. Ran into some problems with it this morning but hopefully he and I will get a little better with it. It's so hard not being able to nurse him but I keep reminding myself it's for his safety. I am trying to pump right before his feeds so he will get fresh milk. Some of his meds are really sticky and a challenge to get through the tube. We will work all this out and hopefully be running smoothly soon. Right now it's taking quite a while to get it all done.

Mo asked me if I remembered how to put the tube in. I told her I did. All the while I was picturing Terri (NICU nurse) & I standing beside Abe's bed in the NICU and her staying OK do it. I laugh at that memory. I am so thankfully she talked me through it the way she did. I was so wishing last night I had them all surrounding me there for support. As I watched that bolus feed go in last night I laughed at the first one Rebekah told me to watch. She came back in to check and I wasn't even looking at Abe. I don't think I had taken my eyes off the bolus like it was going to go some where or something. She just laughed.

Marlee Anne said mommie when you get done with Abe you need to feed Michala, then you need to feed Mary Elizabeth, then could you please fix me something to eat. I told her I would be glad to. She said she would get her a snack for now. She said when you finish that it will be time to start all over again. She said don't forget to change everyone's diapers. She laughed and said except for me cause I don't wear one. She said what I was feeling.

I told mom this morning I am tired. Not only physical, but so mentally and spiritually drained. I am a overwhelmed! It's a lot, it's too much! I just need a breather, just a few minutes to catch my breath. I know this will get better too though.

Once Abe's pneumonia is better we will get the swallow study done. On a side note last night when I gave him his growth hormone shot the sight turned red around it. It had never done that before? Any ideas why Trisha, anyone? I forgot to ask Mo this morning when I talked to her and I am not calling her back again. At least not right now.

A house divided!

We have Georgia fans and a Tennessee fan in our house. You see how much pull I have in this house. John & Robin were trying to be nice to Mike when they gave Abe this outfit. Julie gave him the socks. No matter what color he is still pretty cute! This was right before I had to put his feeding tube back in.

God's Grace!!!

Grace is enabling power sufficient for progression. Grace divine is an indispensable gift from God for development, improvement, and character expansion. Without God's grace, there are certain limitations, weaknesses, flaws, impurities, and faults (i.e. carnality) humankind cannot overcome. Therefore, it is necessary to increase in God's grace for added perfection, completeness, and flawlessness.

I have a dear friend that will not pray for patience for me. She always prayers for Grace. Isn't Grace amazing. I don't deserve it. I am far from deserving it.

Tonight thanks to God's Grace and a little help from my sister a man that is very dear to us came over and prayed for Abe. He sat and spoke very highly of my husband. Then he shared wonderful words about me that I sometimes have a hard time accepting because it's not me it's God. There is no way humanly possible that I can I can walk through this life, the journey or ride this rollercoaster ride without Jesus having a strong hold on my life.

Then the man stood up walked over and asked to hold Abe. He very gently took Abe into his loving arms. Abe was having a small seizure and was crying. He asked his wife and I to stand with him and pray with him. His wife and I laid hands on Abe and we all prayed together. As this man began to pray Abe quieted down. He sweet soul was at peace. The words spoken to God by this man bring peace to me still. I was reminded that God doesn't want my precious baby to suffer. As bad as it hurts me to see Abe suffer it's hurts my God just as much to see him suffer.
Not long after this couple left. Kim, Keith and Grace brought supper. Food - what is it about some good food. Like .... ok so I have no clever words here but I love it. Good food and a good glass of sweet tea. It doesn't hurt that while I am eating Abe is being held and loved on.

So Mike and Marlee Anne come in from a fun night out together. They both needed it so very badly. They eat and we all get to spend time together. Grace helps me get Abe's shot and meds together. As I am feeding him Kim stands up to tell him bye. The biggest smile comes across his face. At first there is a little tug at my heart because I having been working so hard the past week or so to get a smile out of him. She continues to talk to him and he continues to smile. He even talks a second to her. Again God's grace. I so needed to see that smile and to hear those sounds. I needed to be reassured that my precious baby is still in there even though right now those infantile spasm as trying to hide him.

I get everyone settled. The house is quite. I should be sleeping but I am drawn to the computer. I read a note on our blog from the mother of a precious 2 1/2 year old boy named Zack. He was also diagnosed with IS. She post her blog so I go there. I read his diagnosis and see what he is now able to do. Hope? Yes and again God's grace.

Prayers brought God's grace to me. It's always there and I know that. Sometimes I am so overwhelmed with all of it - LIFE that I do miss the blessings. Sometimes I allow Satan in to say if He is your God WHY is He allowing this. I KNOW my God doesn't want this. He has plans for me. My life has already been planned way before now. Plans to prosper me and not to harm me, plans to give me hope and a future. Jeremiah 29:11. That has always been my scripture but today it became new.

OK that's not to say this rollercoaster ride won't get faster and hard to hold on but with the support of our family and friends, prayers from everyone and God's wonderful grace we will get through this. I don't want to just get through it. I want to shine. I want us to shine as a family. I want God's grace to shine through. When this life is over I want to hear my God say well done my good and faithful servant. This is my charge in life. Having three special needs children and a wonderfully only normal one in the family child didn't happen by mistake. There is a reason God made this our family. I want to do my best. I want to be more like Him. I do not want the stress to take over and overshadow the blessings. I want to love this life, love my children and husband. I want to be a better child of God, better wife, better mother, better daughter, better sister and better friend. I want to be what God wants.

OK I gotta ramble on a little more. Today I told Mo I honestly didn't think I could do this rollercoaster ride of infantile spasms again. I thought I remembered it well with Michala. I thought I remembered it being bad but this is not bad. This is one of those bad words that Cindi has to say for me cause I can't use language like that. I told Mo that I got really excited those few minutes that he was doing so great again. I thought all that was coming back to him and the Vigabatrin was truly his miracle drug. Then bam it hits and it's all gone again. The seizures are back. Mo quickly reminded me that I have to enjoy those highs, those blessings to get through the lows. She is so right. That was evident tonight when I saw Abe's beautiful smiles. I haven't seen it again YET and it may be an hour, 2 hours, a day or two but they will come again.

Thank you! Thank you for letting me share our life. The highs and the lows. The blessings that abound even when sometimes hidden. Thanks for riding on this rollercoaster with us. Thanks for those encouraging words, for crying with us, for laughing with us and for carrying us when we are too tired to walk. Thanks especially for praying us through this journey!
Because of God's grace!!!

God's sense of humor!

Well you know I needed something to make me laugh tonight. Grace said uh Michala, uh her diaper, uh it's every where. Well I walk to the door of the therapy room and sure enough there sat Michala in all her glory. No clothes on. I guess it was too hot. She is at least sitting on her diaper and thankfully had not poopied. She had however torn her diaper apart. The inside of her diaper stuffing was every where. Cry? No that wouldn't have helped the situation. The laugh we got from it sure helped my heart and soul though.

Abe's check up

Well Abe's check up today was supposed to be just that. You know filled with all that fun baby stuff. He couldn't even get shots because of his seizures. When will I learn? It's never that easy. I think it would not have hit me as hard if I had had some rest these past few nights. Abe's seizures are worse. He has stopped smiling, laughing, rolling over, cooing and nursing once again. Monday night we tried Ativan and even with that his seizure lasted an hour and a half. Last night we had to give him Diastat (rectal valium) twice. After the first time he woke up and spent some fun time with daddy. The second time he had about 30 minutes that he was awake before the seizures started all over again.

We get to the peditrician's office today and I put him on the scales. Tara (his nurse) and I both start to cry. He weighed 12.6. WOOHOO!!! That's wonderful. Next thing is his temp. No biggie right. Well usually not but he had a fever. I never knew it. Dr. Patonay checks him and he is crackling in his right lung. She is worried and does blood work right there. Sure enough his white count is up. Off to Egleston we go for a chest xray. We get home and Dr. Patonay calls to tell us he has pneumonia in his upper right lung and lower left lung. She is concerned that the upper right is from aspirating because of all the seizures. She started him on an antibiotic and I have called the GI doc to get a swallow study done.

Please lift us up in prayer. Abe's precious little body specifically but the rest of us too because the stress is getting heavy. Just a break in between all this crap (don't tell my mama I said that) just to be able to catch our breaths and regroup.

Infantile Spasm board

I posted this on the Infantile Spasm (IS) board but wanted to add it here to have for journaling purposes too.

I HATE that I am here. I HATE that there has to be a forum for IS. I HATE that I know what IS is. I HATE that this is our second baby with IS. I HATE that I am having to reach out to ya'll. I HATE seeing my baby go through this. I HATE that my baby has stopped smiling, laughing, rolling over, nursing, babbling and cooing. OK thanks for letting me get that off my chest. Most people don't understand and I don't expect them to.

Now for the LOVE. I LOVE the fact that over the past couple of weeks I have been here reading and see the love and support that ya'll show each other. I LOVE the fact that I have a blog and Mike took the time to post this forum so that I knew it was here and felt welcome enough to come introduce us. I LOVE the fact that I have a precious baby to hold and love. I LOVE the fact that I can come to ya'll and be honest about how I am feeling right now. I LOVE the fact that before I have even had any responsing I feel supported. THANK YOU!!!

About two months ago, when our baby was 6 months old he started acting like he had colic. It was from midnight until 5:00 AM. The screaming and jerking. Just like colic. Well I mentioned it to the peditrician and she said it's kinda late in life for him to start having colic. She started him on Levsin drops just to see. It got worse. So I started thinking of other things it could be. Instead of just leaving the lamp on when I would get up to nurse him I started turning on the lamp. There was a pattern to his cries and to the jerks. Surely not I thought. I watched each night not telling a soul what I thought. If I kept it to myself it would stop, it would go away. RIGHT? Well no of course.

Two of our daughters had appts with their neurologist the next so I called the neurologist and told them what I thought. Could we please schedule an EEG. They fit him in the day of the girls appts right before that. I thought things went great during the EEG. When we got to the neurologist he said we will talk about the girls first and then Abe. I said that doesn't sound good. He didn't comment. When it came to Abe he said you were right. I told him I was really hoping he would say I was wrong. He said as soon as they hooked him up to the EEG it started. His EEG report doesn't look good at all. The plan was to increase Phenobarbital which he was already on because he has panhypopituatarism and has trouble with his glucose. Each time it drops he has a seizure. So we increased Phenobarb and added Topomax. I asked about Vigabatrin because it was dd#2 miracle drug. She was in the study program in 1998 when she was 6 months old. He said let's see how this does.

The IS continued to get worse and longer. Everytime he wakes up he starts having them. We have been giving Klonopin to break the cycle but that's not really helping much. Yesterday we got Ativan and it took way too long to stop it. Today we got Diastat and I gave it to him for the first time a little while ago. It stopped it quick thankfully but really slowed his breathing. I have him on a pulse ox monitor just to keep check.

I am bummed right now and probably shouldn't have chosen this time to post but it's nice to know someone understands. I am not sure what our next step is. We did start the vigabatrin. Right now he is taking 15mg sprinkles Topomax - morning and night, Phenobarbital 16.5 mg - morning and night & 250 mg Vigabatrin - morning and night.

Thanks so much for letting me share. Mike thanks again for leading me the forum!

Another praise!!!

I KNOW I can't believe it either another praise. WOOHOO!!! I had sent Dr. Ponseti pictures of Abe's precious feet for him to see what he thought. He replied saying they look very well corrected. He can now be in his shoes for 16 hours. Yes that means he can be out of them for 8 hours a day. I can't believe it. I even emailed Dr. Ponseti back to make sure I read it right. He said yes since we have been consistant about keeping him in them for 23 hours away this whole time he can now go to 16 hours a day. I am so very thrilled and thankful for the knowledge and gift that God has given Dr. Ponseti. Once again we are blessed!

We had a wonderful day today! Mike took Marlee Anne to see the snake guy at the fair grounds. She LOVED it!!! She has been talking about it since she got back.

Thanks for sharing our blessings with us and for your continued prayers.

A Praise!!!

Ya'll have been with us praying us through this phase of Abe's life so I wanted to share a praise with ya'll. Today he opened his eyes. Mom said he smiled for her but I haven't seen one of those smiles. I am holding out for later tonight or tomorrow. He rolled over and nursed for a little bit. This is huge for us because he has gone from not being able to move at all on his own, not opening his eyes or responding in any way. We know he has a long way to go and we have a long road ahead of us with ups and downs and highs and lows. He is still having quite a few seizures but for today we are praising God for this wonderful blessing. I was reminded today of how much I take for granted and how much those little things mean. I told the neurologist that I am ready for my baby back. I think he is heading slowly in the right direction. Thanks so much for your prayers!