Thanksgiving!

Thanksgiving day I woke up thankful for Life...Smiles from my little girl...and the blessing that I have such wonderful friends and family that love and support us so very much through the tough times.

Hello World

VeggieTales - God Made Me Special

One of Vs favorite Docs!

We all have been busy Learning about Victoria!

It's been a very busy week. We discovered that our ceiling has water spots and found out that we have a roof that is leaking in three places. Great! Things brings the issue of mold in the house. We have also been busy learning about Victoria. She sure has come a long way this past month. With that being said, I have been able to see things with her that are not right or are a little off. Something maybe that only mothers can see. We know when things are just not right with our children... Right? I have been searching for a doctor that can really help Victoria with things like: nutrition, immune system, supplements & vitamins, to really learn Victoria, and possible detox from all of her meds that she has been on this past 8 months. If I listed them all, you would be amazed that a little one less than 2 years old could have had all of them in her little body. Oh, not to leave out that she had an xray every day for the past 7 months. I was wondering what that could have done to her little body too. Thanks to Doctor Courtnee, she recommended Dr. Udell. Not knowing what to expect, I called and made an appointment with him last week even though he did not have an appointment open until mid Dec., I guess my years in sales does pay off... He focuses on the things I listed. Come to find out, he discovered that miss V is full and I mean full of candida yeast. He put her on a strict routine to detox her from this nasty yeast. He told me that the symptoms that I described to him about V could all be from the yeast. Like being irritable and unable to sleep, rashes, zoning out, almost like she is not with it. I noticed that about 2 months ago. She started starring at her finger almost like she was stoned looking at it and also grinding off her teeth. He informed me that is like an autistic stim and could be caused by the yeast. Victoria also stopped smiling. So after one week of this doc's routine, she is now smiling more, playing more, not looking at her finger as much, and is less irritable. This stuff could take months to totally come out of her body. Dr. Udell believes that the yeast came about because of so many antibiotics and a weak immune system. Just a peak of what antibiotics she has had this past 8 months:

Zosyn, vancomycin, cipro, cleocin, zaroxolyn, zyvox, fortez, ampicillian, amoxicillian, cefepine, keflex and Victoria is still on bactrium for her week immune system.

The bottom line - V has been more herself the last couple of days and we see this doc again in 3 weeks to continue to clean her out and strengthen her immune system. He is also looking for a good nutritionist for her too. I believe nutrition improvements along with supplements will make a big difference to her development.

Getting back to playing like I am supposed to!

We had a pretty good week. V seems to like it at home. We have stayed out of the hospital now for 3 weeks. Praise God! V loves her new high chair that Grandma Diane got her. We took her for her first walk on Saturday to Starbucks and she loved it. She is supposed to start her therapies soon. Speech, eating, physical and occupational... We look forward to getting back to the Dan Marino center because she loves her therapists there. We used to go before her heart surgery in March. I will keep you posted about the good news.

Feeling better & sleeping better

The last couple of days Little Miss Victoria has been sleeping through the night and feeling much better during the day. The test on Monday showed that her nissen is working well and it would be very unlikely that she would be refluxing. We really do not know what was wrong with her but she did test positive for the Rhino Virus which is a common cold. Her mouth is feeling better too. The docs cultured her tongue and it did not test positive for the fungus called Thrush, but who knows really. I am just hoping that the symptoms do not come back. We are home too and she is getting used to everything here. She loves the Veggie Tales and she has been busy jumping in her jumpy chair...Thank God for Grandma Diane helping us out at home. We had home nursing for the first week but that really did not work out well at all. I wish I could tell you my experiences with home nursing but out of respect for whoever is reading the blog I will leave it at that. I will have some pictures of V at home up soon. Please continue to pray and we thank all for keeping us in your thoughts and prayers.

Hoping & searching for the answer!

I have been so frustrated and stressed trying to figure out what is wrong with Victoria. I have not been able to update because my attitude is so negative. She really can't sleep so I do not either. At any case, I thought I would let you all know the latest with V... she has been back in the hospital twice since her first discharge and we can not figure out what is wrong ... They have done blood work and lab tests and nothing came up. Docs treated her with strong antibiotics and anti fungal meds via IV for 72 hours for Thrush and still no change. Maybe someone out there has some insight as I am desperate for help. She has been drinking pedialyte most of the week because it makes the symptoms go away and she can get some sleep, but how long can she live on pedialyte. I have tried changing her formula 3 times that has not worked. Victoria's Symptoms:

• fever of 101- 103 with around the clock Tylenol for 2.5 weeks (none for past 5 days)
• irritated mouth seems like its burning her ?
• white tongue-we have already treated her for Thrush and did not work.
• not able to sleep
• high heart rate
• nasty rash on face

I will update when we have some news...... We are having an upper GI test Monday to see if her fundo slipped and could be refluxing??? But we looked at that when in Philly and it looked good.
I get so frustrated when V has a hand full of docs that know her symptoms but no answers. We do appreciate there care of course but without solutions to the problems we are left with ?? and of course V is the one to suffer. It is so hard to watch her suffer and not be able to help her. It's like a sick joke . I have had enough already...