A Day in Montevideo and an update on Adeline.

Scott, Brandon, Adeline and I, and Rebeca Valiente all headed to Montevideo yesterday morning so we could accomplish some things before Adeline's pulmonology appointment at 7pm. Rebeca, who is from Peru, is getting married to one of the men in the church on the 20th. Her sister is on her way, from Peru, with the fabric for her dress. She will be left with less than a week to have a dress made. Need I say more? So we took Rebeca to different Bridal stores so she could look for a rental. She couldn't find anything that was modest, or for rent. So I'm sure she would appreciate your prayers for her dress to be nicely sewn this coming week.

We also had to purchase some school supplies for the upcoming school year that begins on March 3rd, if we have our Paces from the States. Our room downstairs is slowly being turned into a school room and so we also needed to by supplies for me as I will teaching/supervising my kids again. I'm not sure how I'll get everything accomplished this year, but I know I can do all things through Christ!

VBS was another thing to tick off the list. Thankfully we were able to find some great costume stuff. I still need to buy some fabric and cut out belts and bandannas for our teachers. I was able to find 4 gifts for the verse winners of the week.

Kaitlin and Bethany have birthdays coming up this week. I knew I had to find their gifts in MV as well. I did. Hope they like them.

After having lunch at McDonald's and dinner at our favorite Chinese restaurant in the mall we headed to Adeline's pulmonology appointment. I can't tell you how pleased we are with this doctor. She really cares about Adeline and her health and understands that we are not totally ignorant to Adeline's asthma and allergies.

She was surprised that we had to import Adeline's medicine but completely agreed with the decision and will be talking to Astra Zeneca, the manufacturer, to ask them to import the medicine for us. If they say no, she said we can go to the ministry of the interior to get their approval for it to pass through eduana (customs). And if that fails we can try a diplomatic import through our embassy. Right now she has 3 more months of meds so we need to get another shipment ordered soon. We would appreciate your prayers for this.

As she was looking at Adeline's x-ray she turned and asked, "Was she sick when this was taken?" She wasn't, that was in the midst of her 4 month long crisis. She explained that she had a lot of mucous in her lungs that shouldn't be there, and that also concerned her.

Adeline as been told she needs to exercise for 30 mins everyday - jumping on the trampoline, running, etc. She already is very active so this won't be too hard for her. The idea is to expand her lungs to help break up the junk so she can cough it out.

She has a recheck appointment on May 7th. Before then we need to get more x-rays and another lung function test. When people with asthma inhale stomach acid they have severe asthma flare ups, so she will also have a GERD (gastro-esophogeal reflux disease) test done.

We also have a referral to another allergist. This one only sees adults but her pulmonologist thinks he will accept Adeline as a patient.

Thank you all so much for all your prayers for Adeline! And for us as we work through red tape to get her the medicine she needs for good health.

Hope

Our dreams, our futures and our faith is summed up in that one little word above...HOPE. Today is the first day on a clean slate of a brand new year. What 2009 will bring forth for us is still unknown, nevertheless, our goals and dreams for our future, for our children's future, stand before us as bright beacons of hope.

As parents we desire for our children to have the best in life. As we gaze into their tiny newborn faces we wonder what the future holds for them. We plan for when they will go to college. We imagine their wedding day. We delight in the possibility of grandchildren. We aspire to be all for them so one day they can be all they need to be to make an impact in their world.

Millions of parents whose children suffer from debilitating, incurable and devastating diseases have the same hopes and dreams for the future of their children. Yet lurking beneath those ambitions is a disease wreaking havoc in their child's body. In some cases, reality takes over to extinguish their hope as the disease wins the battle and takes the life of their child. While in others hopes are dimmed for awhile then suddenly the fog lifts and the beacon shines bright again as better treatments are made, or cures are discovered.

In our family we have two children who have life threatening immune system related diseases. Brandon with his IgA nephropathy needs to take a drug used to control blood pressure. Keeping proteins from being pushed into his kidneys that would damage and scar their sensitive tissue. This drug has been an advance in his disease that has offered us hope for his future. One without dialysis and eventual kidney transplant. Though we are thankful for a way to control this disease we continue to hope for a cure.

Every day with Adeline is a gift from God. As you know she suffers from severe anaphylactic allergies and allergic asthma. Each day for her is a battle. If she misses one dose of her medicine the asthma advances. If she has ingested some hidden allergen her body, thinking it is helping her, catapults her towards death. The only safety net is her epi-pen.

This past year with her has been one of the hardest yet as we have struggled to keep her disease under control. It has literally been a roller coaster ride of ups and downs. Facing the possibility of having to put her onto a daily regimen of steroids was alarming. Knowing that the best medicine on the market here was also one that could cause an anaphylactic reaction was discouraging. Thankfully, we were able to import the one medicine from the States that is safe for her. Already we have seen a dramatic improvement in her daily peak flow readings.

Like Brandon, her disease remains uncured. Each time her numbers drop (or Brandons nephropathy acts up) the fog descends. Leaving me to wonder, will this medicine eventually prove ineffective? What will we do then?

Today the fog has lifted some as a beacon of hope shines brighter at the announcement of a possible anti-allergy vaccine. Though it may not be as effective for Adeline, because she is 8 years into her asthma and allergies, it still offers a glimmer of hope for her future to be asthma and allergy free...or at least diminish the results of her over active immune system.

Bronchial Obstuction of Moderately Severe Grade...

The result of Adeline's spirometry only brings us more questions and leave us feeling like we have even more questions. What is the obstruction? Is it reversible? How much will her new medicine, coming from the States, really help? Will the obstruction continue to grow? Is this just asthma?

She will have two more cystic fibrosis tests on the 11th and will have some chest x-rays done as well. We're hoping that we will have some answers after that.

In the meantime we know that her allergies aggrivate her asthma and so continue to do our best to control her enviroment and make it as safe for her as we possibly can. That is definitely not an easy task. And we greatly appreciate your prayers for her.

Adeline's Appointment with the Allergist and Pulminologist

Boy this kid sure gets a lot of press. Hopefully, someday, I won't have to write about her severe allergies and asthma anymore.

We had her allergist and pulminologist appointments this past week. Scott and I weren't very impressed with the allergist and so we are looking to get a second opinion with someone else. Right away he dismissed her allergies. Even though we told him about the many different tests she had done he questioned the allergies she has. Granted, her beef allergy is highly unusual anywhere in the world and her egg allergy is unusual here. And I'll also grant that we didn't have her records with us...my bad. However, we want, need, to have confidence in the person who is treating our daughter, especially when that treatment potentially involves immunotherapy!!!

After the appointment we promptly bought the medicine he prescribed, Symbicort Turbuhaler - an inhaled corticosteroid and long acting beta agonist- only to read in the insert that it is contraindicated in people with lactose allergies. Scott took the medicine back to the allergist and was told there are different milk proteins and she wasn't allergic to that one. Now how he would know that without seeing her tests, and without testing her, still escapes me. We decided I would do some investigating and also confer with our doctor and her allergist in the States and go from there.

Everything I found out from online errored on the side of caution. Basically the lactose is supposed to be safe for people with milk allergies but (and this is the part that helped us decide) there is a possibility of milk protein (0.012-0.029%) in pharmaceutical grade lactose. Also one asthma medicine (Advair Diskus) also containing pharmaceutical grade lactose says, "contraindicated in patients with IgE-mediated allergic reactions to lactose or milk" .

Keep in mind that her last RAST test at 6 years old revealed that IgE levels to milk were 31.50, more than 31.15 higher than the normal (under 0.35 non-allergenic) level. Knowing that she would be inhaling this medicine and that it has the possibility of bringing on an allergic/anaphylactic reaction, possibly at night when she is asleep, we felt that even this small amount of milk was essentially playing Russian Roulette with her.

All that said we are looking for the same medicine that was prescribed but is in an HFA inhaler and doesn't contain the lactose. We were told it isn't here in Uruguay. I just found the web site for AstraZeneca here in Uruguay and we'll be contacting them to see what we can do through them. If we can't get it through them, then we will look to having it sent to us from the States or Argentina. Which should be fine because we would be able to prove to Eduana (customs) that it is not available here.

Now for the appointment with the pulminologist. We felt much more confidence in this doctor. She actually did an exam. She also took the time to listen to us and our concerns. By this point we had some of Adeline's records that were faxed to us by our doctor in the States, and so, she was able to see for herself the seriousness of Adeline's allergies and asthma.

I'll make this really long story shorter by telling you that she has ordered a Spirometry exam to check her lung function and also another Cystic Fibrosis test and some chest x-rays. Those appointments are coming up and we'll have to go to Montevideo for those.

We would appreciate your prayers for this. We know God knew all of this when He sent us here and He knows how to solve this problem with the medicines. And we also know He knows exactly what is happening with Adeline. I admit that the possibilities of what could be happening are not encouraging. Even if it's "just asthma" she has gotten to the point of needing a double inhaler and she's only 8! That, however, is far better than the possibility of Cystic Fibrosis.

Sometimes you feel like a nut...Part 2

After watching Adeline continue to decline I decided to start her on steroids. Already she is doing so better. She is still fighting the asthma but her peak flow numbers are slightly better and she's not coughing constantly.

It was really a good thing I decided to begin the steroids when I did since yesterday we were nearly blinded out by wildfire smoke from Argentina. The smoke coupled with a bad respiratory virus here has caused asthmatics some major problems. Brandon was no exception and so now he is on breathing treatments too. Isabel was flared up last week but seems to be doing ok in spite of the smoke.

Sometimes you feel like a nut...

sometimes you don't.

In Adeline's case she never feels like a nut - unless she's acting like one. Last night we were at a birthday party of a friends daughter. After we non-allergic people enjoyed the egg white frosted cake and the chocolate chip cookies with peanuts the adults enjoyed a time of fellowship while the kids played with a whistle. Each one in turn pretended to be the leader of a parade. It wasn't until Adeline came in wheezing with the whistle in her mouth that the warning alarm sounded in my mind. She was also sneezing and her eyes were red and swollen. All indications of an allergic reaction. (I wonder when she is going to start paying attention to these warnings of her body.)

Once again we went into emergency measures with her - get the Benadryl, give a dose, and watch carefully for further symptoms specifically anaphylaxis. Hit the brakes...BIG problem...though we had the Epi-Pens we didn't have the Benadryl with us. Not good! How quickly do you think we can get our family rounded up? A few minutes later we were home. Adeline had the Benadryl down her hatch and she was sitting with the nebulizer doing a treatment. And I was once again debating the use of Epi.

I went through the warning signs of Anaphylaxis - rash/hives, difficulty breathing, facial swelling, difficulty swallowing, abdominal cramps, vomiting, diarrhea, drop in blood pressure (how do you recgnize this symptoom in someone else?), feeling of impending doom and loss of consciousness. Since she only had one definite sign - difficulty breathing - plus the beginning of facial swelling I hesitated to use the Epi and opted for the breathing treatment and Benadryl.

I have to say that one of the most difficult things about Adeline's severe allergies is not so much the lingering effects (problems with her asthma) after exposure. Rather it is the need to decide the fate of my child. I have been told that the worst thing that will happen with an unnecessary dose of Epi is a racing heartbeat. However there is the possibility with Epinephrine of cardiac troubles. That possible side effect is what causes my hesitation. And so, I go with the Benadryl, which, I just read, is supposed to be the least effective option because it can take up to an hour to take effect. Thank God that each time we have had to deal with her anaphylaxis the Benadryl has worked. But it's a horrible thing to second guess yourself when it seems the treatment should be obvious.

Tonight I sit at home instead of being at church, because Adeline's asthma is now very flared up. Now I have to decide if she should go on a round of steroids. Dr. Cavataio, if you're reading this, I'm open to your advice.