Avery UPDATES

 

Most of Avery's updates and entries are written by her mother, Marissa.

Avery needs surgery 2005-11-01 23:09:03.0

Avery went to UTMB again today and consulted with Dr. Angel who is a pediatric surgeon. Avery has a hernia in the lower part of her stomach (in the groin area). A hernia is a tear in the wall of the abdomen (muscle). When she strains the hernia fills with intestine and bulges out. This often causes pain. It could be from several reasons like always being constipated or from the pressure of the dialysis. Surgery is needed because hernias do not go away by themselves. If the intestines become trapped in the hernia, serious problems can occur. Avery’s pediatrician said that with little girls their ovaries could get trapped and could be severely damaged and even have to be removed.

Unfortunately, Avery will have the surgery within a couple of weeks. They will cut into her stomach and sew the muscle together and close her back up. During the surgery she will completing sedated. It takes an hour and normally patients are released the same day but they may keep Avery longer to keep a close eye on her because of her kidney disease. Please keep Avery in your prayers.

Avery is so beautiful and is doing really good. She is SIX months old now and weighs in at 12.9 pounds. I think she’s getting chubby. She loves to smile and baby talk all day long. She NEVER cries or fusses. She loves when people speak Spanish to her, she gets so excited and starts moving everywhere and squealing. Raul and his family talk to her in Spanish so she is getting use to that. God bless you all!!!

2005-10-17 19:17:39.0

I'm so sorry that it has been a month since I have updated her website.  I promise I have pictures that will be up very soon.  As you can imagine I've been very busy at home and work.  Avery is doing wonderful.  She weighs in at 11.8 pounds.  Our sweet angel was sick again this past week.  She was running a fever, coughing and sneezing.  She is doing better now, thanks to God.

We did evacuate in time from Hurricane Rita.  Luckily we left at the right time on Wednesday so it only took 5 hours to get to San Antonio.  We couldn't take any chances with the electricity going out since she is on dialysis. 

We are still having issues with her constipation.  She was taking lactulose which is a stool softner but that didn't seem to work so we have to give her a suppositorie every other day.   It's awful, I feel so bad for her.  Raul took her to UTMB today.  They said she looks great and is growing well.  We have not seen Dr. Kalia in a while.  Everytime Avery is scheduled for her check ups, Dr. Azam has been there.  Dr. Azam is very sweet and so easy to talk to.  We couldn't ask for better doctors and nurses.  Please keep Dr. Kalia, Dr. Azam, Jeanene and the rest of the dialysis team in your prayers.  They take care of Avery so well.

Her nightly dialysis is also going well.  She is still sleeping in a bassinet in our room and boy is she outgrowing it.  But I can't let go, I can't see her going to the other side of the house and being so far away.  She is such a sweet and joyful baby who is full of excitement and laughter.  She has discovered her hands and plays with her toys hanging on her carseat.  I'll update pictures soon. 

Under The Weather... 2005-09-17 07:17:03.0

Avery has been sick with her first cold.  She has not been sleeping well, she's been running a fever, coughing, sneezing and even lost her tiny voice.  POOR baby.   She is very fussy and doesn't seem to get comfortable so she has not slept at all.  The minute you pick her up, she calms down.  She wants to be held and recieve extra love....  no problem. 

I was very worried that she had the infection again and would have to be admitted in the hospital.  BUT... THANK God she doesn't have that.  We took her to UTMB where they ran several tests such as blood work, urine samples, dialysis fluid test, etc. and her results seem to be fine.  We had to increase the amount of her shot and one other medicine. 

Other than that she's doing great.  We can't wait until she gets over this yucky cold because she's not acting like her normal self.  She hasn't smiled in several days and normally that is all she does.  I just keep praying my little angel will feel better soon.  God bless you!    

Happy 2005-08-26 22:34:53.0
Sorry I have not updated her website in a couple of weeks. I've been so busy with organizing and setting up her Fundraiser Garage Sale. I know some of you were emailing asking how she was doing because her last update I had some concerns. Thank you so much for all of you who read her updates and care for Avery. That means a lot to us. Today she weighs 10.5, awesome! The doctor did prescribe a stool softner but it doesn't seem to be working.... she didn't go to the restroom for a week. This evening she was again passing smelly gas and was very uncomfortable straining and hurting. So I paged the Dialysis Nurse who was on call which was The Wonderful Jeanie!!! She told me to give Avery a suppository. It worked and she was able to release a week's worth!!!! It wasn't a whole lot but I can tell how relieved she was afterwards. I called Jeanie back to tell her. Jeanie is so caring. Her and Jeanene always make me feel so much better about things. She did say this is very normal in dialysis patients because when she drains the dialysis fluid, it pulls all of the fluid from the gut. She is going to talk to the doctor about increasing the dosage of the stool softner. - Other than the constipation issue, Avery is just wonderful. She is so sweet and precious. She is always laughing and gooing. She is very observant and always looks around to see what's going on. - It was so cute, last night I felt so bad because she was wide awake when I put her on dialysis so I put her in her Take-A-Long swing and turned the TV on the PBS Channel. No joke, Alexa and Avery sat and watched Barney, Dinosaur Tales, etc. for like 2 hours. Every time I walked in there she was really watching the TV. I think she like the colors. She was very content. - I think it may be time to get her out of her bassinet. The past few nights she gets stucks and ends up laying sideways so she has no room to move around. I'm not sure what we are going to do. She sleeps in our room but there is no space for a crib and I don't want her to sleep in her room by herself. - I know I always say she is an amazing baby but she really is. She NEVER cries. She is ALWAYS smiling. She is one happy baby. We just love her to pieces.
Update 2005-08-12 23:29:46.0
Avery just loves Alexa so much. Every time Alexa is around Avery, she will just look at her and smile. If Alexa walks away or moves she will follow Alexa's every move. - Avery is weighing 9.12 pounds today. She's been doing good. She has been sleeping a lot more lately. I have to wake her up in the middle of the night to eat. It is very important for her to eat or we will have to put her NG tube back in so she has the proper nutrition. I was told she was fussy during the day today so now I'm all paranoid she will get sick and have to be in the hospital again. I don't like feeling this way. Then today for some reason during one of her "drains" while on dialysis she started screaming so bad. You can tell something was hurting her. It only lasted 4 minutes but it seemed like hours. Poor baby. I've been checking her dialysis fluid to check for cloudiness but it's clear. She isn't running a fever.... BUT I've learned from past experience, that doesn't mean anything. She is constipated. She hasn't pooped since Wednesday. Raul was rubbing her tummy to see if she was tender or in pain... every time he pushed down she would pass smelly gas. I am calling the Dialysis nurse that is on call when we wake up in the morning. I'm hoping she will call in a prescription for a stool softner that we can add in her feedings. It really bothers us that she doesn't pooped that much anymore. When we first brought her home, she pooped seriously like 8 times a day. They took her off of calcium and magenisium oxide so that is whey she isn't going as frequently. - I will keep you update. Keep our sweet baby in your prayers.