You are growing so quickly! Your vocabulary exploded this month! You were talking a lot last month but you surprise us every day with the things that you say. Your Mommy says you were riding down the road this week saying…"The cow goes MOOOO. The horse goes NEIGH. The pig goes OINK OINK…." haha! You've been saying what the sounds are but not unprompted. :)
What a fun month July was…well, except for your all day visit to the CF clinic. ha! You started out the month going to Lake Varner with DaDa, Mommy, B, Pops and Dee Dee. You love to fish and you're learning more and more to be patient in the kayak. You made it far out into the lake this time with your DaDa.
Fishing with your DaDa…your face is SO cute looking at the fish you caught!
Dee Dee ordered you a "George" to carry around. :) You LOVE George and I love that you love the stuffed George too. That sweet smile says it all.
You and George having some eggs. LOL
You love giving "squeezes" and this was a sweet brother moment. :)
Your 3rd 4th of July! We went to the Mall of GA and then to Bethlehem to watch the fireworks. You loved the bouncy house and the petting zoo.
Look how brave you are! You didn't let the big kids scare you.
Your face says it all. You are so proud of yourself and you should be.
You loved getting to pet the animals.
Last year you slept through the fireworks….this year, you weren't quite sure what to think. You're new saying is, "I'm scared!" and "See me!" (which means to hold you)… :) You had a bad thunderstorm wake you up but we tried to convince you that you weren't really scared. :) This year we were far away from the actual fireworks (well…not REAL close) and that was better.
I love how you LOVE to make faces! This is your shocked face. :) You always ask to see the "video" because you love, love watching videos you are in. We're trying to teach you the difference between a picture and a video. Sweet!
Dee Dee made some spaghetti before we watched "George". You are blowing it off. You LOVE spaghetti.
We love playing in the basement because you can jump all over the place and still watch a movie. :)
You didn't stay here long but you actually laid down on the Love Sac and watched George for a few. Sweet!
Your DaDa took you to Chick Fil A
You love bananas so you thought George would like a bite! :)
This month you decided that you love to push B in the stroller. You both seem to really like it.
CF Clinic days are all long days but the annual visit is especially long. We left the house at 9:30am and got back to Snellville around 6pm. Yikes! Your appointment on July 14th was supposed to be in May but you were sick with a fever/virus so they had to reschedule. This was the longest you had been without seeing the doctor (February-July). Your DaDa took off work so he could go with your Mommy and Dee Dee. We had to go to CHOA first to get a chest x-ray. It always takes a while to do that but we're grateful you no longer have to go to the liver clinic… the liver doctor now comes to the CF clinic (although his wife just had a baby so it will be next time before we see the doctor).
We went for a special treat after your X-ray at CHOA… A cookie an ice cream from Ali's Cookie. YUM!
Seeing what your oxygen level is… 97%. We'll take it!
After several attempts and Mommy even pretending to take her blood pressure with you… they gave up. You were a big boy though!
This picture makes me laugh! The nurse is really, really nice but when she gowns up and heads your way… you look at her like…"I don't think so!" … with your mouth sealed SHUT!
Mommy was glad that DaDa took today off. We hate this part. They swab to see if you are culturing anything in the back of your throat. Since those with CF have sticky mucus it's harder for bacteria to pass on through and much easier to cause an infection.
Those with CF can culture many things but the thing that ALL are trying to avoid are pseudomonas but as Aspen gets older…the chance of him culturing this bacteria is large. By age 10, more than 50% of children culture this damaging bacteria and the percent continues to increase.
The most common bacterium to infect the CF lung is Pseudomonas aeruginosa, a gram-negative microorganism with a propensity to live in warm, wet environments. The lungs of most children with CF become colonized (inhabited long-term) by P. aeruginosa before their 10th birthday. The body's response to P. aeruginosa includes inflammation, which causes repeated exacerbations or episodes of intense breathing problems. Although antibiotics can decrease the frequency and duration of these attacks, the bacterium establishes a permanent residence and can never be completely eliminated from the lungs. The treatments for P. aeruginosa lung disease typically involve antibiotics, bronchodilators, anti-inflammatory drugs, and chest physiotherapy to help fight infection and clear the lung passages. While a variety of antibiotics have been used to treat this bacterium in people with CF, improvements in drug delivery systems (such as inhalation) and more effective antibiotics could potentially improve lung function further. It is the goal of the Pseudomonas Genome Project to further aid this effort by providing a detailed understanding of the genetic capacity of this organism.
Many children younger than 10 culture this bacteria that causes permanent lung damage, so this is why the swab is SO important and why we get nervous waiting for the results.
In a person who does not have CF, the epithelial cells produce a thin, watery mucus that acts like a lubricant and helps protect the body's tissues. In someone with CF, however, the thicker mucus doesn't move as easily. This thick, sticky mucus clogs passages in many of the body's organs and infection sets in.
The two organs most affected are the lungs and pancreas, where the thick mucus causes breathing and digestive problems. The thicker mucus has trouble moving out of the lungs, so bacteria can remain and cause infections.
The thick mucus also is in the pancreas — an organ that produces proteins called enzymes that flow into the intestine to support the body's digestion process. Because the mucus can block the path between the pancreas and the intestines, people with CF have trouble digesting food and getting the vitamins and nutrients they need from it.
CF can also affect the liver, the sweat glands, and the reproductive organs.
The thick, sticky mucus that builds up in our lungs functions like silly puddy. So, when bacteria enter our lungs, they tend to stick around forever whereas healthy people’s immune systems can fight them away. As a result, people with CF harbor dangerous bacteria in their lungs and these bacteria are contagious only to other people with CF or compromised immune systems.
The good news is CF is not at all contagious or dangerous to healthy people. The bad news is the cross infection risks mean people with CF are advised not to be within 6 feet of one another.
Aspen sees many people when we go to the CF clinic. A typical visit means seeing:
* A nurse
* 2 doctors
* Research
* Geneticist
* Nutritionist
* Social Worker
* Lab department
* Respiratory therapist
and soon… the liver specialist.
It's easy to get stir crazy! :)
The geneticist talking things over with Lindsey and Chris...
One of Aspen's doctors listening to his lungs...
Aspen's main doctor looking at the x-ray's of his lungs. They look virtually the same as last year (PRAISE). There is a little bit of mucus that has been there since he was a baby that isn't clearing up but overall… PRAISE that there isn't anything "new" showing up.
Time to take your blood, Aspen! You are such a brave little mister. They need to check so many things but mainly your liver, glucose, vitamin levels and more.
Praise! Your vitamin D level came back at 42! Normal! :) Of course, you take oral vitamin D but it's absorbing. You have a few things "high and low" but overall everything looks pretty good. You did NOT culture anything this time! PRAISE!!!!
It hurts our hearts that you don't understand what's going on but one day you will and you'll know we're doing it all for your health. I'm proud of you little mister!
When the doctor was finished with you… all you wanted to do was crawl into Bennett's carseat and watch George. We had to laugh! I would do the SAME thing. After being in that one room for 4 hours, we all wanted to join you! :)
As soon as we got in the car… you were OUT! And it was OK to have your paci today. You earned it!
The doctor's were a little concerned about your weight. You really haven't gained anything in a year. You've grown taller so you've dropped from the 48th percentile in February to the 8th percentile in July. That's what they call "acute weight loss."
You weigh 26 pounds and are 36 inches tall. You've always been in the "green zone" - meaning all is great... but you've gone straight to the "red zone" (need to take action). You have to go back to see the doctors in August (and monthly) until you gain some weight. The nutritionist came in and gave your Mommy all sorts of ideas to help you gain some weight. Adding oil to your foods, half and half, even mayonnaise to yogurt and shakes. She's trying everything to get your calorie intake UP!
They increased your enzymes as well, so we are hoping that will help you retain these nutrients. The doctor wants to put you on an appetite stimulant if you don't start gaining weight. You actually eat a very good breakfast, a terrible lunch and an OK dinner. They will start by giving you the stimulant at lunchtime only, if you don't gain weight.
It's a proven fact that children who are closer to the 50th percentile for weight do better with lung function later in life, so it's very important to get your weight up.
We're praying. Your Mommy and DaDa are working hard. Other than your weight, you are doing well and we praise the Lord for that report. Eat sweet boy! Eat as much as you will. :)
It's hard to have a diagnosis like CF and never ever worry. But… we've learned that CF is so different with each person even with the SAME mutations. It really is like walking around with an umbrella waiting for it to rain. So… for now…the umbrella is put up. Pray. Hope. Believe and do ALL your treatments. You are in God's hands sweet boy…just as we all are.
Always hold on to this #TRUTH
With instructions to get those calories in…. I thought a cookie might be necessary! :)
You LOVE watching video's of you and of George and really a lot of things but on this day you were fixated on Nickel Creek and that make your Mommy and Co Chri very happy. haha
Your Mommy added oil to your Chipotle and half and half to your shake! A Mommy has to do what a Mommy has to do! :)
Your Mommy and DaDa went on a date and you came to spend the night with Dee Dee and Pops! I love when you wake up from nap or when you stay overnight because you love to snuggle. This is after your nap.
Nelly and Co Chri were over at the house to play...
You LOVE your shoes! Like REALLY love! :)
We went to Chipotle for dinner. We all love that place.
We met Mommy and DaDa for yogurt after their date day but you came home with us!
Yogurt family night!
You slept from 10:30pm until 9:30am! You were worn out from playing and having fun! Morning snuggles are the best!
And so are morning kisses and squeezes!
Such a "hambone" at breakfast...
I love how you laugh and laugh!
We went to Lake Varner and it was HOT! You loved playing in the dirt. There's a part of all of us that wants to say…"NO! Put the dirt down. It might have germs." But you are ALL boy and you love being outside. You also love clean hands thankfully, so as soon as you finished playing, your Mommy cleaned that dirty face and hands. :)
You are still a little :) jealous of Bennett. Bennett was hanging with your Mommy and you thought you should join in on the fun! :) Sweet boy!
Pops is hoping to take you camping one day in his GO!
We just pulled in from NC with it and you loved checking it out!
It won't be long before we will all be camping! We can't wait for the temps to drop out of the 90's and we're off!
Your Mommy took Bennett on his first wagon ride at our house. He loved it and so did you!
Your Mommy loves you both SO! You are both Mama's boys and she loves that. If she is holding Bennett, you need to be held too. Nothing like your Mama's hugs!
Dee Dee was leaving for South Dakota and really wanted an Aspen morning, so we went to Walmart so you could pick out a "prize." Look at your sweet smile! :) You picked out a green and purple football and a small helicopter. SO! MUCH! FUN!
We went to Chick-Fil-A for lunch and got you a chocolate milkshake and some nuggets.
You have really blossomed this month. You are talking a LOT and it's so fun to see what you're going to say "today." This is what you said to your Mommy this week:
"When going to see where Bennett was crawling to, I see him headed toward his brother in the play room. When Aspen sees me coming, he points and says, "mommy, go in there! Come on, Bennett, come on!" LOL"
You are becoming more independent. You are funny and silly. You love all things outdoors. You love Sponge Bob gummy's and surprisingly, Pediasure "milkshakes." Your Mommy is sure glad because they have over 200 calories each. You love your purple milk (yogurt shakes) too. You love to jump and run and kick your feet. You love to bounce everywhere you go. You know your colors and can count to 10. You know parts of your alphabet and can repeat all the letters. You love your Mommy to spell your name on a "doodle" board… you can see your wheels turning as you learn about letters too. You learn something or say something new every day and it's so exciting to watch and hear about.
I'm so thankful your family lives close to Dee Dee and Pops and I can watch you learn and grow and get huge squeezes from you. I love to hear you say you love "to the moon and back!" Your Mommy asks you who her favorite 2 year old is and you always say…"It's me, MOMMY!" I love that.
You are precious and fun beyond belief and you are officially 2 and 1/3rd! :)
Your Dee Dee loves you SO!
This month I am praying….
* For a CURE…as always
* For you to gain weight. You go back to the doctor on August 10th
* For your appetite to increase
* For you to have a healthy and well month
I am also praying for you to have determination and perseverance and a positive attitude as you grow. It's my prayer that you will grow up looking at those with CF that have fought a good fight and continue to do all they can to make this fight easier.
The CF Foundation has asked you to be a CF ambassador again this fall for "The Wish for Wendy" fundraiser that has raised over 2 million dollars for a CURE! We are so excited that you will represent a team in this softball tournament that takes place in October of this year.
Andy Lipman is the founder of "A Wish for Wendy" and also a role model for the CF community. I pray that you will also one day be referred to as a "medical miracle!" Other than accepting Christ as your personal Savior… this is my biggest desire for you… to fight hard with a positive attitude. Andy runs the Peachtree Road race and has for 16 years. What an accomplishment. You can read his story here:
http://www.11alive.com/story/sports/2015/07/02/andy-lipman-ajc-ptrr/29643681/
I am praising our God:
* You have not been in the hospital or sick
* That you didn't culture any bacteria
* You seem to have a good immune system
* That you are a fighter and are so brave
Prayers for a wonderful August! Thank you to all our friends and family that keep Aspen in your prayers. We love you all!
