Thursday, September 29, 2011

God is in Control

It is days like today that overwhelm me. I was at CHOP for Leo's eye appointment and a follow up with ENT. Both appointments have resulted in scheduled surgeries. As soon as I can get it scheduled, Leo will be having surgery to have his eye muscles tightened and while he is still anesthetized the ENT doc will perform a bronchoscopy. The bronchoscopy is to see what is going on with his airway and why he had trouble breathing after his last surgery. The irony here is that in order to do the bronchoscopy and eye surgery he will have to be put under. The upside is that if he does have any breathing difficulties after surgery, ENT will already be on the case. Both procedures are considered same day surgery, but it was suggested to me to pack an overnight bag “just in case”. We also have to monitor, Leo for sleep apnea as he has been snoring at night since his palate was repaired and according to the in-office exam done today he has really big tonsils and adenoids (of course he does) Maybe a sleep study in our future? I was hoping to come to some sort of conclusion about Leo's hearing today (one of the goals of this appointment), but he had fluid in his right ear (of course he did) and besides he can't sit and do the regular hearing test with beeps. So we willalso be scheduling him for an ABR (The auditory brainstem response). He will have to be sedated for this test.

Before I end my Leo update, I will backtrack to Monday, when we were also at CHOP. Leo had an upper GI, which showed everything was normal. YEAH! We also met with the general surgeon about g-tube surgery. He recommended that, since Leo has reflux, we see his partner in the GERD (Gastroesophageal Reflux Disease ) clinic before scheduling that surgery. So that deal is “on hold” at least till after the middle of October.

After our doctor's visits today, Leo and I went food shopping. We then hurried home for our 2 month post placement visit with our social worker. One of the questions she asked was “how are you doing?” That was a loaded question as today I was feeling overwhelmed. Who wouldn't after being to 2 doctor's appointments with both ending in needing surgery. We told her we have good days and bad days. Days when I just want to run away and hide. But there are other days when life is good. Fortunately the good days do out number the bad days.

As the month of October begins, please pray for our family. Please pray for Jeremy and myself. Please pray for our marriage and children. As of right now in October, Jonathan will be beginning casting for a new prosthetic leg waist (this will be at least 2-4 trips to Shriner's Hospital) and he also has a follow-up to a surgery he had a few months ago. Leo will be seeing a cardiologist, a GERD doctor and possibly having ear and exploratory surgery. Amanda, Tyler, and Jordan have a routine eye doctor appointment and I have an annual medical appointment scheduled. We also have just regular life of homeschooling, orchestra, soccer games, music lessons, and play dates … You get the picture. Life is full.

Thankfully God is in control.

Wednesday, September 21, 2011

Things I am learning

Walgreens sells tegaderm, CVS does not.
Neither Walgreens or CVS sell duoderm.
Insurance does not provide enough duoderm or tegaderm for a baby who sweats a lot or is learning to eat food.
If the top of the NG tube happens to pop open, stomach contents will be
deposited wherever Leo is laying.
Brothers are not grossed out by stomach contents, but sisters are.
Jordan is the best assistant when I need an extra hand inserting said NG tube. Amanda prefers not to be involved.
Complex scheduling can make your life more complex.
Childrens Hospital of Philadelphia has the best chocolate berry parfait in their cafeteria.
If you leave Jonathan and Ben soaking in the tub while you write a blog post, expect a huge mess to clean up!

Monday, September 19, 2011

We are family

“Sometimes do you think we have taken on more than we can handle?” Jeremy asks as he is standing there holding Leo. That is a loaded question and one we discussed while I was cleaning up from dinner. Yes, we have taken on more than we can handle in our own strength. Yes, we are physically and mentally exhausted. Thankfully, God gives us the strength we need for each day.

Rewind just a few hours and Ben is telling me that he is so happy he is a big brother to Leo. Ben is sitting and hugging Leo and playing with him.

Yes, life can be hard most days, but we are family(Leo included) and right now we are a family that is learning to do hard things and maintain a God honoring attitude.

Please pray for us as we have many medical decisions to make concerning Leo in the next few weeks. These decisions will probably involve him having another surgery or two. Please pray specifically that the doctors will be able to zero in on the breathing difficulties he had after his last surgery so that they are not repeated in future surgeries. Also, please continue to pray for his eating. We are slowly, very slowly making baby steps forward in this area.

Wednesday, September 14, 2011

On our toes

It is all perspective. Yesterday I thought my biggest problem was Jordan leaving the freezer door open. The end result of that was a boatload of thawed meat that needed to be cooked. I didn't know that about an hour and a half later I would be riding in the back of an ambulance.

Leo had what we believe to be his second seizure. It was his first seizure since being in our family. Both seizures are linked to a feverish spike in temperature after receiving an immunization. One minute we were eating dinner with Leo sitting in his high chair, the next minute he started shaking. This was probably the scariest moment of my life. It seemed like it took forever for the paramedics to arrive but Amanda assures me it was only about 5 minutes. Once at the hospital they focused on getting his fever down. About 2 hours later he was flirting with the nurses and we were discharged.

Leo is somewhat predisposed to seizures with his genetic syndrome, so we will be coming up with a plan before any more immunizations. We are now under instructions to not let any fever get high. (As if we have control!) But basically his temp was only 102.8 so it doesn't take much of a fever to trigger a seizure with him. Bottom line- stay healthy this winter (again as if we have control). I'm thinking a plastic bubble sounds good right about now.

Today was a stressful day, as I was constantly watching Leo. He hasn't had a fever all day so I am hoping we get some sleep tonight and that tomorrow will be a better day.

Oh, in case you were wondering. I cooked and refroze about 4 dinners for our family with the thawed meat. Thank you Jordan for helping me plan ahead for when life gets crazy and I don't have time to cook.

Monday, September 12, 2011

Life is full

We have been bad bloggers. Life is just full, but with no end in sight, I thought I better at least get some pictures posted. It is hard to believe it is September. We have started school and so far so good. We are continuing to have lots of doctor's visits for Leo. We are still figuring out his care. He is now on a continuous feed through the night and we are using a pump for all feeds. He is continuing to progress in all his therapies excelling especially in physical therapy. Please continue to pray for him to begin eating by mouth. We would love to not have to have a g-tube inserted, but will be seeing a surgeon about this option soon. Leo's schedule alone can overwhelm me on a daily basis, but God continues to give me the strength I need to accomplish all that needs to be done. We are also sooo thankful for Mom-mom especially who has been carrying on the home front while I take Leo to all of these appointments.

Soccer Season 2011 starts and look who is in uniform!
Jonathan is thrilled to be playing this year, but he must
play with his prosthetic leg on, which is a new challenge for him- but if anyone
can do it- he can!

The end of August we went to the Funplex.
Amanda looks a little too comfortable in the race car!
Jonathan LOVED the bumper cars and rode them at least
20 times- it wasn't crowded so he could just stay on and go and go...

Leo is continuing to receive therapy in our home.
Look at that strength. He is now rolling from one
end of the living room to the other. Time to baby proof!
God continues to answer our prayers and we received a grant from Show Hope the Steven Curtis Chapman Foundation! We also were invited to give a short testimony at our local Bethany's Annual Fundraising Banquet. We are excited about this opportunity as it is our chance to give back to an incredible agency.

Best Buddies! (today)

On Saturday we went down to Chinatown for the
Mid-Autumn Festival.

Lest we make this adoption, big family thing look too easy- don't be fooled! I deleted all the pictures where we look tired, stressed or overwhelmed!

Friday, September 2, 2011

... And then it was September.

I have been such a slacker with the family blog lately; that and my personal journal too.

What happened? Well, we went on our summer vacation in the last week of July. We got back from that, settled in (sort of) for a week, and then little Leo went in for surgery the week of August 8th. That turned into a much more stressful situation than we had anticipated. The surgery was a success, but Leo had difficulty breathing afterwards. What we thought might be a one day hospital stay became a 3 day adventure!

After that things really picked up for me at work, and the children's school year began, and we had more medical appointments for Leo, and physical therapy appointments, and we had some birthdays in there, and an earthquake, and a hurricane, and a flooded basement, and soccer practices, and one last Summer hurrah before school *really* began ... Kim and I feel like Lucille Ball in the chocolate factory!

The conveyor belt keeps rolling, faster and faster.

In all this activity, I have been reminded of my own limitations. I think both Kim and I are the kinds of people who want to do more, more, more! We like to be busy. We like to feel significant. But sometimes we take on too much.

It's a fine line, I think, between consciously keeping your own personal "space" and neglecting the radical life that God calls us to.

The road of obedience has a ditch on each side! On one side is the ditch of self reliance. That's the place where you carry the world on your shoulders and you take on more burden than any one person should have to bear. On the other side is the ditch of selfish resistance. That's the place where you resist stepping out of your comfort zone unless you see a dazzling sign ... like skywriting or perhaps tap-dancing angels.

I am sure that I am not smart enough to know how to steer myself down the middle of this road. But the good news is that I don't have to be.

Recently I had the privilege of re-reading Romans 8. There I found these words:

Romans 8:6
“For to be carnally minded is death; but to be spiritually minded is life and peace.”


Romans 8:8

“So then they that are in the flesh cannot please God.”

And ...

Romans 8:14-17
“For as many as are led by the Spirit of God, they are the sons of God. For ye have not received the spirit of bondage again to fear; but ye have received the Spirit of adoption, whereby we cry, Abba, Father. The Spirit itself beareth witness with our spirit, that we are the children of God: And if children, then heirs; heirs of God, and joint-heirs with Christ; if so be that we suffer with him, that we may be also glorified together.”


Romans 8:28
“ And we know that all things work together for good to them that love God, to them who are the called according to his purpose.”

What a great reminder these verses are to me that, while my own strength is not sufficient to please God, I am not called to rely on it. Instead I get to rely on His Holy Spirit. My efforts, such as they are, are to be focused not on any outward act, but on remaining in Him. Do that, and the outward acts will follow.

With that spiritual pep talk in mind, I'd like to describe a great challenge Kim and I are facing now. Going in to Leo's surgery, we had a wild and somewhat unrealistic hope that, after the cleft palate reconstruction, some instinct in Leo would kick in and that he would quickly take to food.

That has not happened. Leo is still as dependent on his NG feeding tube as ever. I must admit, that has been demoralizing. By all earthly indicators, we are looking at a long, long haul here with Leo's growth and development. In my mind, the ability to eat solid food is a fundamental cornerstone in his development.

Perhaps it really will be a long, long haul. But that's not going to stop me from praying.

So, if you are reading this, please remember little Leo and his family in your prayers. Please pray specifically that he would develop the ability to eat solid food.

I have this wild hope that someday in the not too distant future I will be able to update this blog and describe a miraculous response to those prayers!