I've had lots of emails and messages wondering if we are Ok. Yes, we are doing really well; we are adjusting to our new routine and I hope to find the time to blog again. Summer and blogging just don't seem compatible for me.
AJ had a really great summer. We were able to camp a lot and we all really enjoyed it. It was also great to have KJF and AWF home. Now they are off to college and we miss them but we are happy they are pursuing the gifts that God has given them.
Here are a few of our pictures from the summer:
Playing with friends
Visiting the fair
Eating corn on the cob (actually it should be called, "licking")
1st time riding a pony
Lots of time with family
1st time planking (If you don't know what it is, take a
look at AWF planking at the light house in Grand Marias)
Then watch KJF teach AJ (at a lower height)
Success!
Throwing rocks into the lake was a favorite of the summer.
Ready to go to school.
This picture is actually a bit sad as AJ was really ready to go to school and most of his siblings returned to school in September. Problem is that AJ's school is not ready to accept the medical advice of his dermatologist; in that he is safe to attend school and that he does not have a contagious disease. So we wait. It's been over three weeks and he is still waiting but they have requested another meeting so I consider that a good sign. We are being patient. We expect to work with this school district for a long time so it is not going to hurt to wait a bit longer. Now to help AJ understand the wait.
The great news about AJ's bath lift chair!
My back wasn't doing so great this past summer and it was so hard to lift AJ into and out of the bathtub. He was not willing to help in anyway - not even stand up. I think he was too afraid of getting hurt. Our physical therapist found Aj a motarized lift chair that lowers him into the bath water and then lifts him back out when he was done. We didn't even have to struggle through the insurance process as it was donated. What a blessing. God is good!
Medically it was a pretty good summer for AJ. He was really healthy and only once went on antibiotics and that was to make sure he did not get strep when his siblings had it. The year before strep really attacked his skin and he still has damage from it. We didn't want that to happen.
The end of the summer brought one medical problem that ended up being a blessing in disguise. We were on our way home from a camping trip and AJ's GJ tube was accidentally
pulled out. That is not good because it takes a trip to the hospital and AJ going under anesthesia to replace it. We decided to try a standard G tube to see if his stomach could handle the feeds. In the past, every time something went into his stomach he vomited it all up. That's why he was fed directly to his intestines. Well, three and a half weeks later and he is still being fed via his stomach. This is great. It's one less procedure for him and one less complication from the EB.
Thank you for following our journey. We are thankful for everyday we have with AJ. We know it is a gift from God. AJ has a little friend, Brian that is not doing so well and he could use your prayers.
Brian is the same age as AJ and has the same type of EB as AJ. His Mom is a real sweetheart and she could use your prayers too. Brian went into surgery a few weeks ago to have his esophagus dilated and some teeth pulled. Unknown to the doctors, his hemoglobin was as low as 3. (Kids with EB often have problems with iron absorption). Once Brian was put under anesthesia, he went into cardiac arrest as his iron was too low for his heart to keep pumping. The doctors did CPR for 30 minutes before they got his heart working. Brian suffered serious brain damage and is in a coma. He is slowly improving and will have a tracheotomy (a permanent breathing tube) soon. Please pray for his Mom, Carmen and Brian too.
But this I call to mind, and therefore I have hope;
The steadfast love of the Lord never ceases,
his mercies never come to an end;
they are new every morning; great is your faithfulness.
Lamentations 3:21-23 (English Standard Version)
Blessings,
Barbara
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