Yep, diarrhea again

Just a quick update to share that Maggie's diarrhea has again become pretty bad. She had 3 pretty wet ones yesterday and then we were up much of the night changing her diaper-- we think about 7 or more times. Today she has had quite a few to the point that we are again starting to worry. This afternoon she had several episodes in a row while laying on the floor. It was just an enormous amount and after talking her into going on the potty to finish up, she had a good cup or more of straight liquid. On the bright side, she did go on the potty, was pretty proud of herself, and got 2 stickers out of it.

So, we are going to make the call to the clinic tomorrow morning requesting a visit to very possibly rehydrate her electrolytes. We are getting pretty sick and tired of this, not just dealing with so many messes and loss of sleep, but looking at Maggie's frail skinny body and distended belly. We'd like to take a picture of her to show you what this diarrhea has done to her, but I'm afraid it might be too graphic.

I am going to put another call into Dr. Mezoff, her GI specialist, to see if there is any way possible that we can move forward with another type of treatment because the Imodium is just not doing it. It's a very sad sight down here right now and we are feeling pretty bummed and hopeless. Please pray for Maggie that her diarrhea will STOP! and that her weight and overall nutrition will increase.

Steroid week

Maggie finished her steroids yesterday evening and so we are hopefully on the road to recovery. This week was much better than last month. Maggie still had her effects of the steroids, but we didn't see the Vincristine side effects, which we were happy about. However, a little part of me wonders if because they reduced the dose this month, if it still did the job on any cancer cells remaining in her body. I pray it did.

Maggie's sleep of course was affected--no naps in bed, but being held. She was able to go down at night for bed, but it took longer to do so. Steroids seems to make her more lethargic, sleepy, and so she layed around a lot on me. Last night and today she seems to be much louder vocally, to the point where you'd think she was a bit intoxicated. It's almost a bit funny and reminds both of us of our nephew when he doesn't get his nap. Regardless, I'm just happy she has continued to talk. Listening to her talk is so wonderful and we really missed it for the 3 days that she stopped last month.

While we are finished with steroids, we have several days before we will see our old Maggie return. She got sick in a restaurant today and her diarrhea has again picked up, so we definitely are not out of the woods yet. We pray though that these effects will go away immediately and Maggie will be on the mend.

I am posting the last of the pictures that were taken on Maggie's birthday. Enjoy!

Playing (or rather eating crackers) with cousin Brendan on Maggie's new princess table.

Our birthday supper at Steak and Shake. Maggie enjoyed the cottage cheese and milkshake (a rare treat since being told she is no longer allowed to have milk).

"Hey you..."

Physical Therapy

We made some leaps and bounds today during physical therapy. Maggie didn't cry! Or at least waited to cry until the very end of therapy (I think she got tired of walking and playing). This is quite remarkable as we have been in physical therapy since June and Maggie has cried at her weekly visits the entire time. I am hoping this might be a turning point in her therapy and better yet, her walking.

When we pulled into the hospital this morning I told Maggie we were going to see Nancy, her physical therapist. She responded, "walk" because of course that is what we do in PT, practice walking. I then asked her if she was going to play and she responded, "balls." I believe that Maggie is a great observer. She won't speak with people she doesn't know, but instead takes everything in to be able to "talk" about it later. She also has a very good memory as she tells us about experiences out of the blue after seeing something that jogs her memory.

So, when we came into the physical therapy room Maggie said she was going to walk. She also told Nancy that she was two (she is so happy to say that). This is an incredible step in that Maggie is speaking to someone else that is not her family member. I tried to get her to talk to Detch, aka Dr. French, the other day and she didn't, but today she was very talkative. Nancy was quite surprised and impressed.

Maggie used the walker to pick out a basket of balls to then throw into a basketball hoop. She did all of this willingly and in case you have forgotten, on steroids! I was so happy that I couldn't help but continue smiling. It has been so difficult for me to take Maggie to PT and listen to her scream the entire time. I have told Andy that since I am responsible for taking her by myself now, I was going to cancel PT. We are both miserable for the 30 minutes of play time, but today, it was a nice surprise.

I think this shows that Maggie is indeed feeling better (or has been feeling better) and because of that she is much more willing to play and walk. At home she has been again cruising along the couch and has even managed to hold onto the wall and my hand to continue walking after the couch has ended. She will tell others that she has "walk, couch" so she is obviously very proud of her accomplishment. Though we have a long road ahead of us before she will begin walking, we are very happy for the interest she has shown. I think that is our biggest obstacle (along with strength, but hopefully GI will be able to help us with that).

Please continue to pray for Maggie as she is half way done with her steroids. She is doing pretty well so far and I just hope it continues. Last month, Thursday through Saturday were our very tough times. Please also pray that this week will not knock Maggie back in her increased interest of walking and development.

Clinic Visit

We visited the clinic yesterday for Maggie's monthly Vincristine, Pentamidine (anti-pneumonia infusion) & IVIG. We were saddened to see Maggie's weight has continued to drop, even though she eats constantly throughout the day. She was down to 22 pounds-- a 5 ounce drop from 3 weeks ago when she was dehydrated.

Maggie did really well with all of her infusions. We had a picnic set up on the floor where she ate over 10 packets of butter. We continued to have the nurses call down to the cafeteria to bring more up as we ran out. She ate a big bake potato with the butter and when that was finished I spread butter on crackers.

As we came into the clinic yesterday, I told Maggie that we were going to see Dr. French. She is now saying his name and recognizes him. She calls him "Detch." I asked her if she was going to tell him how old she was and she of course said "2." She was all prepared and even when walking by him whispered his name, but as soon as he step in our room, she was mute. No smile, no words, nothing. She kept her eye on him, even at the corner of her eye to make sure he was still there. She is so shy when it comes to other people. She really can talk and does so up a storm, but nobody would know.

Maggie is a very observant little one and like I said, talks about what happens after the fact. So, when she came home and saw her Daddy, she told him about Detch. She pointed and said belly (he always listens and feels her distended belly). She pointed and said teeth (as he looks in her mouth with a flash light), and she pointed to her ears and said "all done." She says "all done" when she doesn't want you doing something.

Anyway, after discussing with Dr. French Maggie's side effects from last month, he agreed to cut Maggie's Vincristine dose in half to hopefully stop some of the toxicity that she faced (the loss of fine motor being the big one). He decided against putting Maggie on maintenance fluids this week (a suggestion from her GI doctor, Dr. Mezoff), and told me if her diarrhea worsens during the week to come back in and he will hook her up. After talking with Dr. Mezoff's nurse about the increased Imodium not changing her diarrhea or stool patterns, they decided today to up her dose yet again to 20 milligrams versus 15. It appears he wants to try to combat the diarrhea with just the Imodium. We will see. I am not a believer yet.

So, that was our visit in a nut shell. They are continuing to do tests of Maggie's stool and her blood to look for bacteria or viruses (all of which have come back negative thus far), absorption, celiac, and food allergies. It is my bet, along with what Dr. French believes, that Maggie has an absorption issue. What the cause is, nobody knows (and nobody will diagnose it as of yet), but I don't really care the cause. Just give us a way to fix it so that Maggie can begin to grow and develop like any other little child and fight this disease.

Please pray for Maggie especially this week during steroid week. We are 2 days down, 3 to go. She has done pretty well so far, but we don't normally see a big change until Wednesday evening or Thursday. Please pray that she will have minimal side effects, that her diarrhea will not worsen to the point that she has to be hooked up to fluids, and that the drugs that she is taking will do the job-- kill the cancer and stop the diarrhea.

How old are you Maggie? Two...

These series of pictures were of Maggie as I asked her how old she was. She responded (with a smile) 2!

Showing her cow to the camera.

And her horse... Might I add, ever since we were at my cousin's wedding back home, she always says "horse...poop." She got a chance to see some on the road and it made a lasting impression. She says it was "big" and there were "two" horses. It is just too cute and I laugh every time.

Maggie's Present

We were a bit unconventional when picking Maggie's present out for her birthday. We took her to the toy store and had her choose what she wanted. She loves animals so much so I thought she would like the barn with animals and sure enough, she was in agreement.

On her birthday, when I asked her if she wanted to open her present, she got very excited and shook her head while saying "ya." They learn so young how exciting it is to get presents. In these next set of pictures, hopefully you will see the excitement on her face. I didn't add one that we took, but it was of her almost crying in desperation as I was too slow trying to get the packaging off so that she could play with it.

We are so happy that she is beginning to play again. It proves that she is feeling so much better and that perhaps we are providing her with more interesting/engaging toys.

Trying to open up her present. The bag was almost as big as Maggie.

A farm!

Checking out her animals.

More Birthday Party Pictures

Maggie thought the box was so prettily wrapped that she didn't want to open what was inside. A cow was a part of her new Magnadoodle. She loves farm animals! Maggie playing with her cousin Ian.