Good Morning!

Busy Enjoying Life!

Victoria has been doing very well. It took a month and 2 antibiotics :( to get over the traceitis; but seems to be under control. she has been very busy as usual with therapies. She made a major accomplishment last week with her ability to breathe with her passy muir valve on her trach. This valve helps one with a trach be able to make sounds and speak. Some people may refer to this as a speaking valve. We have been working on this all summer but she just did not like it. She can wear it on her trach up to 30 minutes now. This is the next step for little V to be able to speak and make sounds. The ENT doctor let us know that her vocal cords were scarred badly due to the intubations last year in the hospital and has concerns that they will stay paralyzed therefore, unable to make sounds. We believe and pray for something different:) She seems to be making progress with her whole food organic diet too. She seems more energetic and is much stronger. We believe that she will be crawling very soon too. Also her secretions have been much less with this new diet. Thank God for that one. Anyone that knows Victoria well knows that she needs to be suctioned every 5 minutes or so. That has not been the case lately much less. We have been on a few trips this month one in Miami at the famous Fontainebleau hotel and she went into the pool for the first time. She really likes the water.... We also took a trip to Tampa and she was a very good little traveler. Overall V has been moving right along. We are very proud of her:)

Vita Mix & Homemade Blended Formula!

We found a whole world of nutrition for Victoria last week. I was so excited to receive the new sassy Vita Mix Blender which can blend meats to waterlike substance. Victoria said goodbye to formula and hello to real whole food for the first time. Because she does not eat by mouth we are limited to what we feed her. Or so I thought until I found this wonderful group of many parents online that feed their children real food from the G-Tube. The key is this wonderful blender. I also read this great book "Homemade Blended Formula Handbook" I just love it...... So far the transition has been a good one. I already see a few positive changes in Victoria as she has a bit more energy and is way more regular if you know what I mean:) no more glycerin suppositories...... This past week her ORGANIC diet consisted of Chicken, brown rice, oatmeal, quinnoa, broccoli, apple, pear, carrots, milk, yogurt, olive oil and water. I am so happy that she has tolerated this great food because she has bad reflux. So this week I will try some new foods like, Kale, peaches, Kefier and avocado. I really hope by improving her nutrition we will see an improvement with her immune system and her low T-Cells. We just had some blood work done to check her cells and found them slightly improved from when she was in the hospital. Last October they were 150 and now the are 450. However, the normal range for a child her age would be 1200 or higher. So we have a ways to go but I believe that God will continue to show his power through her immune system too. He has carried her through so much already. Thanks for checking in on us for now that's all.

Ugh.......Tracheitis!

So It has been an eventful week as V became sick on Wednesday. She woke up coughing, coughing, and coughing. She was not able to eat and she was throwing up. She was not herself and was crying most of the day. I had to take her to Miami Children's to see Dr Sanchez-Vegas who knows V extremely well. She is an Infectious Disease Doc and is great with helping Victoria with overcome illness. She said that V has tracheitis and put V on Tobi nebs which is an antibiotic that in inhaled via breathing treatment. So far it seems to be working but V is still not herself. She did wake up today more playful than the last couple of days. And get excited she slept until 5:30 a.m. which is better than 3:00 a.m. the last couple of days. Yes Mommy is tired too:) Hopefully she will overcome this soon and be back to her sassy self:) Also when ever V gets sick or in on antibiotics she gets a nasty outbreak of yeast everywhere. She has it in her mouth again and other places that make it really uncomfortable for her. We are double dosing Fluconizole to help so far we are not winning with that nasty stuff. Victoria has an extremely low T-Cell count in which she does not have the greatest ability to fight virus and fungus. V had blood work done a month ago to see if her T-cell situation has improved at all. I am waiting for the results from her Immunologist Doc. Well that's it for now V just woke up from her morning nap. Stay tuned ..... God Bless

Hanging out with Mommy!

Hello everybody!

It's been a very long time since I have shared our lives on our blog. We have been going through many different stresses the last 4 months. It has been hard to get online because we have been living in a hotel since coming home from Eddie's funeral in April. The hotel only has one computer and everyone fights for it. I really do not feel like it. But I finally got my laptop fixed so I can have internet access. We were totally lost without it. To get back to our story......We came home from MN to find mold that made a huge mess in our home. We had a microbiologist come in and test the mold levels in our home and found that we had to leave ASAP for Victoria's health. She started coughing like crazy. Victoria's health improved while in MN. She put weight on, her respiratory status improved, she became stronger and really enjoyed her stay there. She did not have nearly as many secretions in MN either. So coming home to the mess we did only added to the stress of our family getting over the senseless death of Eddie. That is another topic entirely...... We had a mold remediation company come in and detect the cause of the mold, turns out that a leak was from above. That was fixed and the walls, ceilings, and floors had to be removed and replaced. Our bathroom had to be remodeled and the entire condo had to be painted. We should be moving back home this weekend. Thanks the Lord:) we are so ready to move home. They did the mold testing again once all the old stuff was torn out and everything is clear of mold. Living in a hotel for months really gets old, especially with V's special needs. She really needs her crib back. I think she is really tired of sleeping in her pack & play. She has really been a trooper through all this. Hopefully we can get our lives back soon. Victoria has been trying really hard to crawl. The funny thing is that she does crawl but with her face dragging on the ground. This looks really funny. We are trying to strengthen her upper body via therapies but it will take time. When she had her first heart surgery she was 10 days old and Dr. Scholl made the entrance through her back side and so her muscles and nerves are very weak. Also she was in the ICU for one year very sick after her second heart surgery in which that was a major setback for her to develop motor skills. Her journey to sit, crawl, and walk will be a long one. She still can not eat by mouth yet. I gave her some squash & carrots and saw some come out through her trach. Oops... So we are still feeding her via G-Tube. She recently started working with a new therapist and a passy muir valve which allows one with a trach to vocalize. She has not made any sounds yet since having the trach, so we are hopeful that with the passy she will make sounds. That too is a journey because she hates it and fights the therapist to take it off. She is very strong willed little girl. Sassy to say the least.....

Victoira's 2nd Birthday Party!!

We are so Proud of you Birthday Girl

Happy 2nd Birthday Victoria Faith!!

Happy Birthday Victoria...We are so proud of you....She is amazing and very healthy. We have been very busy with many therapies for her and they really seem to help her. She has also been very busy traveling this year. Minnesota, Disney World Orlando, and Tampa. She is a real world traveler....

In Memory of my Loving Brother Eddie

I would like everyone to remember my loving brother Eddie for his many wonderful gifts..His life was taken so abruptly Saturday night. I am still in disbelief. He had such a love for life. He loved the outdoors, hunting, fishing, and biking. He appreciated the simple things of life. He loved the wind against his skin and the sun on his face. He loved his friends and family so very much. I really do not understand how bad things like this happen to such good people. I pray for peace and understanding. I thank everyone for all of their love and support during this terribly tough time.

I'm Getting Stronger Every Day

Victoria has been very busy with her therapies. Physical, Occupational, Feeding, and this week she will start Speech Therapy. We finally got her hearing aides working properly. It was very hard to get them fitted for her little ears so they had to remake her molds until they finally fit. We can tell when she is hearing because she cries at new sounds. It kinda funny to watch her. she is getting used to them as well as new sounds. Grandma Diane finally went back home to Minnesota so we really miss having her around. Victoria misses bath time with Grandma... We miss you Grandma D. Thanks for taking such good care of me while being here.

Quick visit to the hospital

We had to take Victoria to the ER Saturday because she was sooo congested and having trouble breathing Friday night. Can I tell you that 9 hours in the ER just about drove us crazy. I was worried about V's lungs because of her past runs with pneumonia. Turns out that her lungs look good and she did not have any bacteria infections. We are still waiting on some but they sent us home Monday thinking she just has a virus cold. I hope it goes away soon. We have to suction her over and over again. In 6 hours today Grandma Diane used 30 catheters to suction her. This is very tiring for V and us. Well we are just grateful to be back from the hospital so soon. That's all I have for now. Take care

V's Eyes & Ears

We have again been really busy taking V on many doctors appointments. We have been working on her eyes and ears. As you can see from the picture, Victoria is wearing glasses now. She seems much happier in them so we think that she can see better. She laughs a lot more watching veggie tales. We took her 3 weeks ago to get fitted for her hearing aides. They audiologist had to make molds of her ear and of course Victoria was not happy with us holding her down for that. We had to pick colors so we picked pink sparkles for the part in her ear and we picked a color that matched her hair color for the outer part that goes around her ear. We are heading back this Friday to pick the hearing aides up and have more tests with them in her ear to see if she is responding to them. On another topic, mommy ended up with tonsillitis and Victoria has a nasty cold. No fevers thank the Lord!. But she is not sleeping at night, so mommy has been up with her for 4 nights. With the lack of sleep and running around on doc appointments I'm not surprised that I got sick. I also am receiving allergy shots now. It's been really stressful lately and is taking a tole on my health. Dad is in Texas this week for work. Thanks for Grandma Diane's help this week we really appreciate her help especially this week. Yesterday I went to the doctor for myself (that seemed weird) and was in bed the whole day. When I went to the pharmacy to get my prescription filled the pharmacist's looked at me and said YOU TOO. I am always in there for V's meds and I mean ALWAYS. Take care for now and thanks for following our lives. Blessings to all our friends and family!

Victoria's Health update!

We had a wonderful Christmas and New Year. Really low key here with Victoria. Grandpa Bob came to Florida to see us and that was really cool. Eddie and I are not used to being so low key. We used to travel all of the time. We always spent Christmas with my family in Minnesota. So being in Florida the last 2 years with V seems a little weird. We all went for a lot of walks and of course doctors appointment along with Therapies. Grandpa Bob liked to come too. Grandma did a lot of great cooking and Baking as usual. She sure helps us out a lot since being home with V. Like Grandpa says V needs her own pit crew to take care of her and we love every minute of it. O yes, dad did cook the Turkey for Christmas Day and it was really good I must say.

Victoria had a great holiday and got lots of gifts from Grandma and Grandpa. I think we need to move to a bigger house to fit all of the new toys all of which are learning. Grandma says that V has to catch up on all she missed out of during her hospital stay. As for her health update, here it goes.



Heart & Cardio- Hypoplastic Left Heart Syndrome

She is doing very well with her heart function after the Glenn Surgery in March. She is getting pretty good saturation's but about the same she had before the surgery which is around 80% in which you and I will get 100%. This is typical for toddlers with this condition. The cardiologists think that she may have some collateral's that effect her saturation's from being a little higher. Will will see time will tell. Victoria will need one more heart surgery when she is around 4 years old. This makes me get knots in my stomach just thinking about it. I believe that's when she should get 90% or higher saturation's. Lately, her heart rate at night has been dropping very low and we are not used to this. Usually it is the other way around higher from fevers. Its almost like she is either way too hot or too cold. I will be making a call to her cardiologist this week on this one. Heart rate in the 50s and 60s is getting me a little concerned usually she sleeps around 85 to 100.



Infections & Immunology/Allergy

We went to see Vs Immunology Doctor in December and her T-cell count is still very low.

This means that V has an extremely compromised Immune System. That is why we can not take her to places like church, malls, restaurants, and travel etc. we do not want to risk her getting sick and ending up back in the hospital. The good news is that she has not had a fever since her last hospital stay in October. She takes an antibiotic every Mon/Wed/ Friday once a day to protect her from getting pneumonia. I would like to know a little more about her immune system which seems to be a mystery right now. I am hoping over time that her T-cells improve. She will also be getting tested for allergies this January. I have them and wonder if V does too.





Sight & Hearing

We took V to see her Eye Doctor Miller in December He is a really awesome Doctor! We found our that she has a very bad astigmatism and poor eye sight. So we just took her to get fitted for Glasses. Pink might I add!!! They should arrive from California next week. She had 20/20 vision going into her 2nd heart surgery this past March. The doctor explained to us that when young children Vs age are in the ICU settings for long periods they can get damage to their eyes from the lights that are left on all day and night in the rooms. I guess that is not good for them especially when babies are sleeping. Another thought he had was that the eye sight could have been weakened during her coding, which happened 3 times this past year. We will never know what the cause is but just focus on helping the situation.

As for her hearing, we are taking her to the University of Miami @ Jackson today for hearing aid evaluations. She had tubes put in her ears this past year and at first we thought they helped her hearing but we did another hearing test just before leaving the hospital in Oct, and it showed similar hearing loss in both hears just as before the tubes were put it. Victoria has a lot of secretions and we thought the tubes would help her. Once V gets her hearing aides and glasses She should be able to develop must faster motor skills. We are really looking for to her getting both. She will also see a world known Doctor that does the C. Ear Implants in a few weeks...



Lungs & Respiratory

Victoria's biggest issues after her heart surgery in March of 09 was with her lungs. She had Kylothorax and then kept getting pneumonia's after that. That is why she had to have the Trach put in. Her docs suspected that she kept aspirating her secretions into her lungs. Since she had the surgery for her trach her lungs are much better and getting stronger every day. No more pneumonia's. The only thing we battle daily with are her large amounts of secretions. We have to suction her trach sometimes every 5 minutes. This is hard on all of us. Grandma and I had a big scare right before the holiday. She was sleeping and she got a big plug of mucus caught in her trach and she stopped breathing. So we had to change out her trach very quickly but it was scary. This is all part of it and we do what we have to. Also she stopped making sounds sometime when she was in the hospital. We really miss hearing Victoria's Voice. We pray that she does not have vocal cord paralysis from being intubated so many times. Please pray for her that V will be able to makes sounds again.



GI/Nutrition

Since being home from the hospital V has had problems feeding unlike in the hospital. Its been so bad the last couple of weeks that she has been throwing up her food. This is bizarre for her because she had a G-tube placed and a nissen wrap in her stomach when she was 2 months old. This took care of her reflux and getting sick until now. She gage's and coughs when she feeds until she eventually throws up. The nissen is supposed to stop her form being able to throw up and stop her reflux from getting to her esophagus. Yesterday we went to the GI doc and she took V off of Zantac and put her on prevacid. Hopefully this will help her. v has to take aspirin every day for her heart and aspirin and reflux in young children do not mix well. She can not eat anything by mouth yet because her last swallow study test showed that V aspirated the barium into her lungs. She has a very uncoordinated swallow. I have been encouraged that this should get better as she gets older.



Motor Skills

She is getting stronger every day. Holding her head up more and more. Still working on tummy time with her so she can strengthen her upper body so she can sit up by herself. She is so used to laying on her back in the ICU that is her comfort zone. We are working to break that and she is at times fighting us to lay on her back. She can roll over but most of the time stops herself. It is funny to watch. We are thankful for her occupational and physical therapies that will really begin to help her soon.

We are so very proud of our little girl. She is truly amazing. God has really carried her and us this past year and I do know that the best is yet to come. Please continue to pray for Victoria as she gets stronger and develops herself past this stage of her life. Thank you for all of your kind thoughts and prayers. We love all of you very much!

Hmm! I wonder what the New Year will bring us!

V loves to sit in the patio and look outside at the lake and ducks!

My Mom busy working with Jaime

Jamie and I were busy developing a new website for our company.
Check it out at http://www.tngworldwideinc.com/
Jamie is a true blessing. She really helped us out while we were in Philly with
V at CHOP. she pretty much ran the company for us. She is one of the hardest
workers I know.

My Dad went Fishing for New Years!

Our friend Winson caught a Shark!

I have no idea what kind of fish. But at least Dad caught something!

I love the holidays

My Mom at the Sawgrass Mills Mall shopping for me!

I couldn't go "too many germs"

My new Jeans! Too Cool

of course watching veggie tales!

My New Stroller!

I am really getting the hang of this stroller thing. Especially with" Bob Revolution "

EJ loves to watch Veggie Tales with Me!

Grandpa Bob Comes to see Me

I think it is so cool that my new stroller is called "Bob Revolution"

The Beach on New Years Day