Boston for one, Tubes for two

Things are busier than ever!  Ethan and Evan are not only walking, but climbing as well (up the gate, the stairs, the crib, the couch….anything and everything!) and that means we have to be extra vigilant to make sure all the doors/gates are shut and can never turn our backs on them, because we never know where they may end up!   Isn’t all of that supposed to wait until the “terrible twos”?!?!

They have both continued to have persistent ear infections (almost constantly since May) and all of the misery that accompanies them, such as fevers, not sleeping, not eating, crankiness and constant antibiotics, which makes life generally miserable for everyone.  This has in turn impacted Ethan’s hearing as well, and so (to make a long story short)….they will both be getting tubes in their ears on Friday, September 26th.  We are very blessed to have found a wonderful pediatric ENT doctor here in Dallas for them (Dr. Alan Murray), which is an answer to prayer.  He will be performing the surgery.  Please pray that everything will go well, that they will not experience any complications and will have a swift recovery. 

Aiden is about the same, although it seems that his symptoms have slowly begun to worsen, as we have seen in the past.  He is actually vomiting even more often than before, now that the tube is feeding into his stomach and not his intestines.  He continues to be on a special amino-acid based formula and is receiving reduced fluid and feeding volumes which are administered by feeding pump into his stomach over a continuous period of approx. 14-16 hours throughout the day. 

Right now it is a balancing act, trying to keep him minimally nourished and hopefully find something to help before he has significant respiratory complications from all of the vomiting.   Fortunately, we learned this week that he has been approved by the FDA and drug manufacturer for Cisapride, a limited access drug which is very effective in treating general G.I. problems. 

Hannah will be taking him back to Boston Children’s Hospital on October 1st, where they will test and monitor him while they begin administering the drug through their limited access program (Boston Children’s is the only hospital in the US that can obtain the drug through a very closely monitored program with the FDA and drug manufacturer).  This is a drug which was previously widely used for pediatric GI issues and was very successful with almost no side effects (they saw significant improvement in approx. 70+% of the cases); however, it was taken off the market due to some complications with improper testing and drug interactions.  It can cause serious cardiac complications, including death, under certain conditions.  This is why Aiden needs to be tested regularly to ensure his safety and that he does not have any reaction to the drug, particularly given his history of strange reactions to pharmaceuticals. 

We have not yet heard back from our insurance company regarding coverage for this visit, so that is definitely a prayer request.  We are so very thankful for Hannah’s mom, who has been such a blessing with her willingness to come back and forth to help out through all of Aiden’s constant hospitalizations and travels to Boston.

Additionally, the (wonderful) GI doctor that we have found in Boston believes that it is imperative that we find a way to get Aiden some very intensive feeding therapy very quickly, so that he can begin to take something by mouth–even if it continues to come back up.  Unfortunately, due to the constant vomiting he has significant oral aversion, so this is a major issue.  The doctor is concerned that if we miss the small window of ‘opportunity’ that we have now, Aiden may not take anything by mouth for years.  Feeding therapy of any kind is difficult to come by due to the significant shortage of speech therapists, and most feeding programs–even for minimal therapy–have months and months of waiting lists.  There are only a few *intensive* feeding programs in the country, particularly on an out-patient basis, and we are fortunate to have one here in Dallas, although it is extremely difficult to get into.  We have recently seen God open the door there for Aiden with a preliminary interview last Friday, which is a huge answer to prayer.  We are still waiting to hear back from them, so please pray that this will work out.   If he is approved and able to get into the program, we will have to take him into Dallas 5 days a week for 8 hours a day, for at least 4 weeks initially, possibly longer.

Ultimately, we know that he is in God’s hands and that our Heavenly Father most certainly knows what is best for Aiden…but the Cisapride approval is certainly an answer to prayer and at this point, the only recourse that we have. 

The next few weeks will be hectic with the twins tubes and Aiden’s Boston trip. Please keep them in your prayers that all goes well. 

Specifically, please pray for:

1)  Aiden/Trip to Boston

  • Safety
  • No adverse reaction and that the drug will work!
  • That the insurance company will cover the visit, including transportation 
  • Access to the intensive feeding program

2)  Ethan & Evan’s surgery next Friday

  • That the surgery will go well, with no complications
  • Speedy recovery

An additional answer to prayer: we have found a replacement for our mother’s helper.  Carolina started two weeks ago (and she is still here…what a blessing!).  She is wonderful with the boys, and they love her.  We are so thankful to have her! She and her husband are here from Brazil to go to Bible college.

Below is a short video of the boys and a few recent pictures as well.

 

Classic “happy” Aiden

Evan ponders life’s greatest question: “when do we get to eat?”

Apparently, he can’t even stand his own screaming

Ethan just took a bite of…something

Happy, smug, cocky…another classic Aiden pose

Evan is loving life!

The eyes just get bigger every month

Ethan tried to break into mommy and daddy’s room. If the door is not closed, they move as fast as possible to get in

Evan demands to be released from “prison”

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