Wednesday, September 29, 2010

A Step Towards the Buddy Walk

With the Quad City Buddy Walk only days away, our house is buzzing with Buddy Walk paraphernalia!

We received the personalized awareness bands that I had made, a little over a week ago. I sent some out to our long distance family members who will be unable to attend. That way they are all still a part of this occasion!

We received the official 2010 Buddy Walk t-shirts yesterday. They are not what I expected to see. Everything I have seen has always been white, with the awareness colors, blue and yellow. I got to say, while I like the typical awareness attire, I really like the red of our shirts. I guess last year the color was orange! Fun.

This year Justin won't be able to attend the walk because he will be working. He used up all of his vacation days when Vada was born and had to spend three weeks in the NICU. He does have two days left, but we want to save them, just in case.

Justin's parents will be watching Vada, since she isn't suppose to be in social settings. So as far as family, it's just the girls and I going. However, I know that we do have a good size group of people who are planning on coming. Which is exciting.

Tonight Justin helped us get ready for the walk by printing out some signs for us. My plan for the girls is that they have these pictures, that show who our "buddy" is.

The girls are excited to be caring them, so that's good. I want to include both Jasmine and Kiliegh in this walk. I want them to be proud of their baby sister and show it. I want this walk to be fun and exciting for them. That way, I am hoping, each year when it starts to get close again, they are looking forward to it.

This year, I bought boxes of candy bars and let Jasmine and Kiliegh go out around our neighborhood and sell them. They were so excited, and not only proud to do it, but proud of themselves for earning the money to donate for their baby sister. How cool?!?

So, Justin helped make the signs. He is sooooo great! I picked out the pictures and told him what I wanted and he did it for me. Yeah, I'm spoiled. It was fun.

Between the signs and the personalized buttons, I don't think that anyone wont know who we are there for.

Tuesday, September 28, 2010

A Light At the End of the Tunnel?

Tonight I received an expected phone call with some unexpected news.

I met Laurie (an RN/Case Manager/Dr. Hogansons asst.) during last weeks visit with Dr. Jennings. She had come in before I took Vada to get her labs done. Laurie and I went over the basics of what I was told is going on medically with Vada and what I understood about the Methamalomic Acid Anemia.

Laurie said that she was going to call Dr. Hoganson after she received the results from that days the blood work. She was going to see if he would give a "set in stone" diagnosis. We had already begun to be told different stories and understandings of MMA. It was beginning to become confusing and overwhelming. Laurie said she had information she could give me that would help, but she wanted to make sure that Dr. H. approved.

Laurie was calling to tell me that she had received all of the lab work and had already spoke with Dr. Hoganson. Turns out Vada does NOT have MMA like we were told. After one week of daily vitamin B12 injections her B12 levels "sky rocketed", and her MA levels balanced out. What does that mean? It means that Vada is suffering from a B12 imbalance. Why? Well, more than likely, from me.

Vada is just now starting to really enjoy her solid food, and if given the choice, she would choose to nurse every time. It's just that obvious! So, the vitamins that she is receiving are coming from me, from my breast milk. Turns out that I am probably lacking B12 as well. Which makes sense. I was anemic when I was pregnant. Although, not enough for my midwife to feel like she needed to treat me for it.

When the MMA first came up and Dr. J. and I were discussing what "they" thought was happening I brought up the fact that I was anemic when I was pregnant. I asked if it were the possible cause of this, for Vada. He said no, that what we were looking at was MMA. This was coming from a conversation that he had had with Dr. Hoganson. So I wonder how it goes from one thing to another. One set in stone rare diagnosis, to another. How could you be so sure about one thing, then a moment later not?

So yeah, its frustration to have the run around with Vada's health, yet again. However, I am going to bask in the fact that with this diagnosis she will be okay. Maybe our light at the end of the tunnel is coming sooner than we thought!

We were told that I can stop giving Vada the B12 injections as well as the L-Carnitine. So, now she is only taking the Keppra and Zantac orally, and the ACTH IM once a day, (Which... we are weaning her off of!).

Now, as far as I go with the B12... I have to get some blood work to see what my levels are before anything can be done or even said about it. Typically, you have to have extremely low levels of B12 yourself, to not produce enough for your nursing child. (From my personal understanding of it.)I haven't read if having a low level of B12 could turn into an inability to metabolize B12. I haven't had enough time to check on it. I guess its just something ill have to ask the doctors about.

Saturday, September 25, 2010

Peoria... Again

Yesterday we took another trip down to Peoria. Our weekly visit with Dr. Jennings.
There's not a whole lot to be said about this visit, which is not something I am complaining about!

Vada's blood work from last week showed that her Methalmalomic Acid level had increased, which we expected. Next weeks reading, from this weeks labs should show a decline. That's our hopes. IF they do go down, then we know that the L-Carnitine and the B12 injections are doing the job. IF not, well, then I don't know. I would assume that we would continue for a bit longer before we call it quits, considering that this up coming level results would be the results from only one week of of being on the L-C and the B12.

Her blood draws went much smoother this time. Only three pricks and four vials of blood. That's relieving compared to the five pricks and eight vials from last week!

Vada's weight and measurments all seem to be doing well. Sure she's sporting some chipmunk cheeks, but other than that, shes doing very well.
We are starting to wean Vada off of the ACTH. Starting tomorrow I drop her dose from 5ml to 4.5ml. Every couple of days i'll continue to drop the dosage until finally there is nothing to wean her off of.

Were looking at the first week in November to be completely finished with the ACTH. She will still be on Keppra, which is also a anti-seizure medication, but it is nothing compared to the ACTH. If she is able to maintain no seizure activity without the ACTH then she should be able to be in social settings again sometime in January, maybe February. That, however will depend on her and the types of social settings. For now, its still a non-issue.

Weaning Vada off of the ACTH is a double edged sword for me, and rightfully so. She needs to eventually get off of it. There's no doubt there. The longer that she is on the steroid, the higher the chances are of long term side effects occurring.

When we first started her on ACTH I was really looking forward to her being off of it. Like that day, I was ready. However, now that I am weaning her off, I am frightened at any gesture or even sound that is similar to anything she may have done when she was having the seizures.

Since Vada has been on the ACTH I have watched the two video's that I took of her having her first seizures at least a hand full of times. I know that from an outside point of view that they don't look like much. However, they are devastating. The damage that these types of seizure can create can be irreversible. To me, Vada has enough to deal with. Her road has been paved with a rocky surface. Much like any other child, as a parent I don't know what her future holds. I do know to expect set backs and delays, and in some areas not a full function of certain abilities. The thought of something coming in and damaging areas that could already be damaged or delayed tears at my heart, especially since I have no control over it.

I find myself begging God on an daily basis to not let the seizures come back, or to change into something worse. I ask for him to let this be the end, like he has done for so many other children who have had to go through this. I casually have conversations with him letting him know that I would really like to move ahead now.

For every negative thought I reinforce it with a positive one. I actually verbalize the positive thoughts out loud. I personally need to hear them, but only if they are coming from me. I think that if someone else were to continue to spit out these random positive words of encouragement as much as I do, I would probably want to smack them. Yes, I am that annoying.

I am trying to never let anything come out of my mouth that makes me sound as if I am complaining. I try not to mentally complain either, however that's a bit harder to control. I know that it sounds absurd, but, I am afraid to complain. I am afraid to be weak. I don't want God to think that I am ungrateful. I love Vada and the family that I have been given. I think God wants me to look at what I have and really see it for what it is. I do and I am.

Thursday, September 23, 2010

The BIG "3-0"

Well, it's official. I am no longer twenty something. Nope. I'm moving ahead and leading a life of a thirty year old.

Today started out and ended up to be very pleasant. After the girls went to school Vada and I went back to bed. Justin got home, took a shower and then got into bed with us. We snuggled for about half an hour before Vada and I had to get up.

On a side note Justin has been working the night shift every night for the past five nights. He has two more to go. When he works nights he leaves home at 5:30 p.m. and gets back at 7:30 a.m. Once he gets home he showers and goes straight to bed. So we don't see each other a whole lot when he is on nights.

Today, when Vada and I got out of bed he got back up with us because he wanted to show me something.

Justin's mom and dad put this outside on our back deck for me.

It was a nice surprise. (:

I put the lilies on the window sill in our kitchen with the roses I received from Justin's Aunt the morning before.

The day was very laid back and extremely relaxing. Justin woke up around 2:30 p.m. and stayed up. He said it was my birthday and he wanted to spend it with me and not sleeping. Yes, he really is that sweet!

Justin's parents came over for an early dinner, their treat! Since Justin had to work tonight we had decided to eat earlier than usual, and since we couldn't go out, Justin's parents brought dinner to us. I was suppose to choose something, but luckily I couldn't figure out what I wanted. I say luckily because Jim, Justin's dad choose for me, and it was absolutely perfect!

My favorite part... the Jarrito's Mexican soda shots! Jim had chose five flavors; Guava, Fruit Punch, Lime, Mandarin and Grapefruit. My favorite flavor was the Guava. I checked online because Jim had said that there was a brown bottled one that was also at the store, but he was not for sure as to chat the flavor was, so he left it. I wanted to know what it was. I was thinking Chocolate or Root Beer. I was wrong. It is something called Tamarindo. Supposedly it taste like sweet and soured dates or prunes. I don't know about you, but that does not sound like a soda that I would like to try. I think its safe to say, Jim made a very good choice of leaving that one behind. They do however have Strawberry, Watermelon, Mango and Pineapple. Those would be fun to try out sometime.

During dinner Jim would open a bottle of soda, pour it into each of our glasses and everyone took a turn toasting, to me! It was very sweet.

After dinner I was handed my birthday "bucket". (Im not quite for sure what else to call it, other than a bucket.) Regardless, it was fantastic!

Justin's mom, Annette and sister Lindsey put this together. Thirty things that had to do with getting older. I still cant get over how fun going through these things was. I will remember it always.

Do you remember when you used to buy film for your cameras? Each roll came in a plastic protective tube. That's what filled my bucket. Thirty individually wrapped tubes. Each one had a saying tied to it as well as something inside of it.
Here are a few of my favorite ones:

Magnifying glasses, because my sight will be one of the first things to go.

Snazzy ear rings, that just happen to have the number's "3" and "0" on them, so I can proudly wear my age.

Gum to chew... before I loose my teeth and cant chew it any longer.

Marbles in case I loose mine.

A compass (four to be exact)just in case I need direction.

A brain, that when added to water grows. Just in case I loose that as well. (Yes, I know what it looks like, but seriously, get your head out of the gutters! Geez!)

Plus a few sweet reminders that I am loved.

Jasmine made this card. She had been working on it for awhile now. She is such a sweet girl. We've had some rough moments with her but I wouldn't trade her. She is my baby, no matter how old, or how big she may get.

It was a wonderful time. Turning thirty was not sad, or depressing like many would say. Turning thirty felt no different than turning twenty-nine. The day itself, well that's different. Today was wonderful. I have everything I have ever wanted and more.

Tuesday, September 21, 2010

Primary and Seconday Colors

What do yellow and green make when mixed together? Green, you say? Wow! Why didn't I thin of this when I ordered these?!?

Where has my head gone? Obviously, it's attached, but my brain checked out awhile ago!

I ordered these bracelets from some online company for everyone to wear in honor of Vada during the Buddy Walk. This walk is very dear to me. It is our first walk, but I will continue to do it for the rest of my life, regardless of what the future may hold. I pray that next year Vada will be well and healthy enough to attend. I am so proud of her and I want everyone to meet her. I want to show her to the world!

Anyway, when I ordered these this is the picture and type of bracelet I ordered. First, this is NOT the color scheme that I asked for. Blue, Yellow and white were the ordered colors.

Clearly the colors are in a solid form. NOT blending together. Right?

Well, although very nice... this is what I received.

IF the colors hadn't blended together into green (blue and yellow are the awareness colors for Down syndrome) then I would have liked these even more that what I actually ordered.

I called the company and complained. Yes, I complained. I don't want the green in them. They said that all I had to do was email them a picture of the bracelets. If they approved the reorder then I would need to send these bracelets back to them and then wait another week or so after they received the bracelets before I would get the new order.

Here is the "BIG" deal (at least), besides there being green in the bracelet. There is only ten days left until the Buddy Walk. I cant risk sending these ones back and not having any at all. So I am stuck with what I got. Kind of reminds me of that saying... "When life hands you lemons, make lemonade." Its a good saying.

It erks me, but it is what it is and I choose lemonade today. Green is what you get when you mix blue and yellow together... DUH! Next time I do something like this ill know better and order solid colored bands.I still like them and I do look forward to handing them out to our Team Vada members.

Monday, September 20, 2010

Another Busy Day

Yesterday, was another busy day. Vada's visiting nurse Cathy (whom we absolutely adore) came for her first out of three weekly visits. Then Vada and I headed out shortly after she left. We had to go to her pediatrician, Dr. Herr. Seeing him is a weekly must. We go to Dr H. at the beginning of the week, and then Peoria at the end. Both are suppose to be quick check in's. However, Peoria, has yet to be anything but quick.

Dr. H. walked in holding her file. It's become about half an inch thick now. Nothing compared to some, but never the less, a bit over whelming when it is filled with your six month old baby's medical information. He had his normal visit paper clipped to the top of the folder. You know, the one where they make their notes for that days visit, later to be filed in with the rest of them. He looked down and said "It looks like she's on new medications?" I replied with a "yep", and began filling him in our or latest medical concerns.

I told him how after a couple of weeks of being home from the first hospital stay (right after Vada was born) the Health Department called me with the same concerns that we were having now. Her MA count was abnormal. The Health Dept. wanted to run the test again because it was a rare thing to have come back on the newborn screening. They told me they'd run the test again and would contact me if this new test had came back abnormal.

They never called back so I just assumed that everything was fine. I had actually forgotten that it even occurred until Friday when we met with Dr. J.

Dr. H said that he doesn't remember seeing anything come in on it, so he left the room to go check. He came back with the results of the second screening that had been done. It was "normal". That in itself is a good thing. However, what is discrediting those results is the that the last two labs that have been done showed both to be abnormal, and to be rising. So, were not really paying much attention to that particular test. It could be an indication that something else is not right.

Maybe something is throwing her count off?

That's more my question, than one from a doctor and the truth is, probably not.

Dr. H. said the second test is probably inaccurate since the original one was off and now these newer ones are showing the same thing only with a rising number count for the levels.

Before leaving the office Dr. H1"s. office he gave me a copy of the results from the second screening and I plan on taking a copy with me on Friday to Peoria.

From Dr. H1.'s office we went to Trinity to get an X-Ray done of Vada's abdomen. She is experiencing more GI problems. It went from Duodenal Atresia, then the repair and weeks of recovery. Then she experienced over six weeks of blood in her stool, which was also pure diarrhea. For those issues we were dismissed by her pediatrician, then we were told that she has Colitis from her Neurologist. Now, the GI specialist says that that is not Colitis, which is a good thing and he should know one way or the other because this is his specialty. Plus, he is the one who ran all of the GI test's when she was last hospitalized.

I guess that misunderstanding,miscommunications and even misdiagnosis tends to occur more often than not when you have five different specialists treating one person.(Pediatrician- Dr. Herr-H1, Cardiologist-Dr. Bramlett, Neurologist-Dr.Jennings, GI specialist-Dr. Halabi-H2, Geneticists-Dr.Hoganson-H3). That's why I pay attention and ask questions. I am Vada's voice.

The bleeding has stopped now and we haven't seen any sign of it for over three weeks now. Every time she has a bowel movement I test it for blood, and it is always negative.This too is a good thing.

The new issue, is that she is having only one BM (bowel movement) a week. Well, up until yesterday that was the story. She went twice yesterday and already once today. (This is about to be a TMI moment, just an FYI) Her BM's are not quite "normal" if there really is such a thing when your talking about poop. They are very pasty, very, very stinky and not seedy like a typical breast fed babies would be. When she does go, she usually over flows the diaper, which she would because it takes her so long to releave herself, but there are no hard pieces.

She had a colonoscopy and endoscopy done when she was in the hospital. To me, it almost seems like she is holding it in. Which sounds weird, but I cant help but wonder how sore she may have been after the procedures were done.

Whatever may be the cause I am hoping that it is passing, and that yesterday and today is a sign that she is getting better. I am crossing my fingers and praying that she goes again a couple of times more before this Friday. If she does I think that I will have Dr. H2. hold off on the Barium enema. She goes through enough on Fridays as it is. She will still have to have seven or eight vials of blood drawn drawn that day, so if I am able to eliminate anything for her I will.

After the hospital we came home. I helped Jasmine and Kiliegh with homework. Then Kiliegh went to her dad's and Jasmine went to Karate. When Jasmine came home I had to take her to the library and wait in the car with Vada while she renewed a book. We then came home, had dinner, she studied more I bathed Vada and then Jasmine went to bed and I started to have a pretty upset stomach. I was up with Vada until 12:30 a.m. and then as soon as she fell asleep I did too!

Nights have been pretty long and once she is down I don't have much time to go to sleep because she tends to wake back up around 1 a.m. and then again at 4 a.m. Im lucky and grateful to my husband that I am a stay at home mom, so the lack of sleep can be made up for during the day if I really need to catch up on sleep.

Today, I have been on the phone with the Social security office, for Vada. I was hung up on three times before I actually got the opportunity to actually get something done. I have a phone appointment for the 30th of September. We actually may not be able to get her qualified because of Justin's income. That is just crazy to me, but it is what it is and anything, no matter the amount is something we didn't have before. It helps.

Dr.H3's office called today and confirmed Vada's referral. He will be seeing her on October 7th, as planned. The good thing about all of these specialist's is that they all share the same office, excluding Dr. B, he just shares the same building. So My trip is always the same and I don't have to worry about getting lost! Dr.H3 is actually from Chicago, but he comes to Peoria for clinics. Which is what Vada will be going to on the 7th.

My stomach is not as upset as it was last night, but I still don't feel "well". I think that I am just overly tired however, so I have been taking it easy today. Our car was hit well over a month ago, it was rear ended. Its been in the shop being repaired for over a week now and the body shop called to say that its ready to be picked up, so Ill be doing that a little later, and that's about the extent of my day. I am seriously trying to be as lazy as I possibly can be today.

I've received two phone calls and a nice FB message from three very special friends today. All were at different times and for different reasons, but all were equally special. Being secluded from friends and family takes its toll and even though it is worth it because of the cause, it still tends to get a little lonely. Sometimes, I cant help but wonder if I still have any friends left. So, thank you ladies, you know who you are. Your friendships are cherished and I love and miss you all very much!

Friday, September 17, 2010

A New Diagnosis & Two Added Medications

For the last three weeks Vada and I have been taking a trip back to Peoria once a week to see her Neurologist, Dr. Jennings. Today was our third trip. Basically, we are just doing check ups and going back through every test that has been preformed from the previous visit.

Today's visit was scheduled for 11 a.m. Last weeks visit was as well, but it only took about an hour to be seen. Dr. J. doesn't make appointments for Friday's, he just see's patients on an emergency basis. Vada's situation is a bit different because of her treatment and he wants to see her once a week. He also wants a visiting nurse to come three times a week and for us to take Vada to her pediatrician once a week as well.

Before I get into how the visit went I have to say that I think Dr. J. is a great doctor. Soft spoken and seems to have a kind heart. His bedside qualities, I am learning, are hard to find in doctors, let alone specialists. Most specialists, in my short experience, seem to have a chip on their shoulder, or really big heads! Dr. Jennings is down to earth. People(his staff), refer to him as a skinnier short bearded version of Santa Clause. Its a close comparison. In situations like Vada's its nice to have a doctor that is willing to answer any and all of your questions, and he does just that.

It was almost 1 p.m. before Dr. J. finally made it to our room. Everything went smoothly,at least for the first few minutes. The conversation was light. He asked a hand full of his normal questions. "How's she doing? How are you doing? Have you noticed any seizure activity? And so on. He even brought me in a bag of food because we had been there for so long! His own personal stash of trail mix and veggie chips. That's my kind of food! Up until this point I was happy with how the visit was going. I thought I was about to be on my way out, which made me things eve better.

On a side note Jasmine started Karate a month ago. Tonight was her first promotions ceremony. She was going from the beginners white belt to the red belt. I have missed the majority of her classes and I really wanted to be there to cheer her on.

Instead, I was helping hold Vada down while she was stuck five, yes, count them...five times to obtain enough blood for eight vials of blood (they threw in an extra vial, just to be sure they got what they needed).

  This has also become a ritual Friday afternoon activity. Did I mention they had to do it five times? What about the fact that they went through her scull? Its a sad thing to watch, but I refuse to walk out of the room. I always have to help hold Vada. Usually i'm by her head so I can at the very least whisper into her ears, in hopes that my voice may calm her somewhat.

Anyway, things were (note the emphasis on "were") going smoothly, until Dr. J. received a phone call and had to step out for a minute... or thirty-two, but who's counting.

As he entered I noticed he had extra papers in his had. He sat down next to me and said. "I'm glad that everything is going so well, but here's what I am concerned with today." He shuffled through the papers in his hands and pointed down to a bold printed title. Methylmalonic Acid Deficiency. He began discussing levels and acids and then he brought up a name of one of his colleagues,Dr. Hoganson, who was from Chicago. He said that Dr.M would like to see us, but for now he would like to start treating Vada immediately. For what, I was still unclear about.

Turns out Vada has a high levels of Methylmalonic Acid and those levels are increasing. Actually, they seem to be doubling week by week, which is why we are doing weekly blood work. Dr. J. called it "organic" acidemia metabolic disorder. Organic, because we still need to diagnosis which type she is effected with.

Long story short. Dr. J. is out of his field on this one, his words not mine. He cant tell me if Vada will live through this. Its rare.Basically Vada's body is not processing certain acids. So on one side she is going with out them, on the other its building up a storage of toxic acids. Eventually those toxins can build up and "over flow" or over dose her. This can eventually cause her to slip into a coma then pass away. I'm not for sure on the time frames of any of it. I am assuming were okay for awhile because of the three week wait until we meet with Dr.H. from Chicago. Were starting a form treatment to see if it'll help, if it doesn't help it cant hurt.

We began treatment of daily intramuscular(IM) injections of cyanocobalamin, (vitamin B12). Over 90% of children with this deficiency respond to vitamin B12 injections. About 40% of children with this deficiency are helped by this treatment. We also started Levocarnitine orally. L-carnitine is a amino acid that your body producing naturally. Your requires it for energy metabolism and for proper use of fats. The bad thing with the L-carnitine is that a side effect can be seizures. However, if we were to not treat this new condition of Vada's it too could cause another type of seizure.

Our hopes are high, and our faith is even stronger. I don't know what God has in store for us. I'm not angry, but a I would be lying if I said I wasn't bitter. I silently curse the mom's, my friends, who complain about trivial things like their children having headaches, ear aches and runny noses. I have to stop myself before becoming too irritated. I try to remember that they haven't had to suffer with their child like this. Their complaints are significant to them as well, but I still just want to say "Really.. a head ache? How tragic." I try to remind myself that I was once that mother too. Its not fair. Its not fair for me to discredit their concerns and its not fair that Vada is going through this. I know. That's where my bitterness kicks in. The problem for me is that I just don't understand any of this. Why so much? Why with her? I hate to sound like a big baby myself, but she has been through so much, I wish I could take it for her. She deserves a fair chance at life. To run and play like any other child. She has enough to deal with, she doesn't need anything more. I don't hate God, actually, just the opposite. I feel a strong need to be at church, but I cant get there with Vada. So I listen to our pastors sermons on podcast and I pray, a lot. Sometimes I wonder if this is Gods plan. Is he trying to break me? Push me down as far as I can go? Test me? Show me where my place is while secluding me from my friends, family and activities? No. I believe not. Its something else. Maybe its to show me whats really important. Okay, I get it. I know that my husband and children are first, after him. Now, stop this mess. Let Vada grow and live and let us love her and watch her grow. Please.

Dr. J. made a comment yesterday, "Why so many diagnosis for such a small baby." he followed that comment by turning to me and saying "Your a good strong woman, and mother." All I could do was give a weak smile, because inside I was breaking. If he only knew that I was already shattered and worn. "If Vada can be so small and yet so strong, then I have to be too. For her." I said. I stood up and walked out to the desk to make our appointments for the following weeks to come.

That's all. That's all I know for now. Ill continue to read about it so I know what to expect and I will continue to update everyone.

I like to blog. However, I have a hard time finding time to do it. So with that being said, ill try to stay up to date on the important things in life.

And now to sweeten up the situation, a little eye candy. Taken with my cell, so not the highest quality, but still sweet.

Wednesday, September 15, 2010

Today was the first time I felt a little hopeless and a bit cranky with Vada. She woke up at 1 a.m. and I had just laid down about forty-five minutes earlier, so I was tired. I came up stairs to her room, pulled her out of her bed and laid down with her in Kiliegh's bed (Kiliegh was at her dad's). I nursed her on the left then I nursed her on the right. Rocked her. Patted her and then nursed her again on the left again, that's all she wants to do anymore, nurse. Then I put her back in her crib, she was still cranky but nothing I did including laying her to play with her toys seemed to sooth her. I think that she was uncomfortable because she sort of flung her self from side to side as if she couldn't get into the right position. Ive learned over the past couple of days that if she is like this and I lay her down to be by herself for a few minutes and then pick her back up, she is better. Almost like she needs to throw a fit, express her frustrations. Just like at one time or another we all do.

She has this plastic Baby Einstein fish tank that she really likes to lay in her crib and watch, so I turned that on, hoping that it would sooth her restless little body to sleep. Nope. That was not the solution!

Shes been having a difficult time passing stools, so I am sure it has something to do with being constipated, but I knew who the real culprit was. Or at least I know what I am going to blame this attitude change on. ACTH.

Baby roid rage.

Other parents had warned me. Told me to expect this. I listened. I believed. But, well, its been three weeks, I had figured I would have seen something sooner. Don't ask me why. It makes total sense that it would take a little time for the steroids to build up. Bless her heart, she is so strong. She tries to be in a good mood, I know it. She is typically a pretty happy girl as well as pretty easy going.

As of the last couple of days however, she seems to have a hard time getting comfortable. She likes to cuddle with me and nurse. Another thing I was told, a constant need to "eat". She wants nothing to do with solids, but she had made me completely dry on both sides, from nursing so much at one time. Yes, dry. I tried to suppress some milk out on my own, and nothing! Obviously, my body made more, but usually there is no problem in that department!

I talked to the pediatric gastrointestinal specialist and we are doing a upper abdominal x-ray and a barium enema x-ray towards the end of September to try and figure out if there is another problem with her GI track. For now, I am doing glycerin chips if needed. The glycerin really doesn't do anything, So, her being bound up has something to do with he irritability. At least I think so. He also said that she does not have Colitis. Which Dr. J her Neurologist said she did. But Dr. H. said when he did the endoscopy and colonoscopy he only saw mild inflammation which was caused by cleaning her out/ preparing her for these two tests. So, that's no longer a concern. Which is a relief!

Here's the real reason why I am so tired. Through all of this I am trying to keep Vada sleeping in her crib. I love her sleeping with me in our bed and I don't care for anyone's opinion on it. By baby, my rules. However, our bed is very high and our floor is concrete with carpet on it (a basement bedroom). If she fell it would be a huge ordeal, she would probably be seriously injured. So, when she does sleep with me I don't sleep very well. By keeping her in her bed I don't have to worry about her falling and I don't have to worry about weaning her out bed again. So, when she does wake up I sit upstairs either by her crib rubbing her back through the bars,rocking her in the rocking chair or laying with her on the couch. Once she falls asleep with me I try to get her back in her crib. That is if I don't fall asleep myself. If she wakes up again I repeat the process. Now, I could take naps during the day when she is asleep. I am a stay at home momma, but I always become preoccupied with cleaning, or depending on the days the girls. Plus, we have the visiting nurse (who I have come to like a lot!)who come three times a week, Vada's pediatric doctor once a week and her neurologist once a week. It makes it raaly hard to get anything done when I am running all over and then using my free time sleeping. So I don't nap. That's my fault.