Thursday, May 6, 2010

Why pray?

Today is the National Day of Prayer, so I pose the question with which I have wrestled: Why pray at all? During my twenty-five day stint at the Children's Hospital, I had a lot of time to think. After the doctor's left and it was quiet; I held my baby and listened to him breathing heavily as he slept. I looked at the bruises on his arms and feet where they poked him several times to start an IV. I looked at the tube that ran down his nose into his stomach so that he could receive the extra calories he needed to grow. I looked at the clock in anticipation of the next test Henry would have to endure and held back the tears.

I had been praying, for months, asking God to give my husband a job. I had cried out to Him to fix my baby, but Henry wasn't getting better and we still didn't have all the answers as to what was going on with him. I was tired, and I didn't feel like I could pray any more. I didn't have any more words, and for the first time in my walk with God, I felt numb.
I also felt deeply alone. Alone, because for a majority of days I was alone. Alone, because I felt isolated in my pain and sufferings and did not know many people who could relate to what I was going through. Alone, because I didn't FEEL like God was there, I didn't FEEL His presence, He seemed distant, if at all there, and silent.

If God is all knowing, than He already knows what I need and want. If God is all powerful, than He could answer my prayers. Yet at times He chooses not too (or at least not in the way or time I want). This has been hard for me to work out in my faith. Some people believe God will do anything we ask Him to do, and that if we pray and believe hard enough than it will come to pass. I don't believe that. I do however, believe God is all powerful, I do believe He is all knowing, and I do believe He loves me. This belief isn't based on my feelings. I have found over time, that my feelings change, but God does not. I believe these things about God because the Bible tells me, and I believe it to be His Sovereign Word.

So why pray, when our prayers may not be answered in our timing or to our liking? Here's what the Bible says:

Pray because

1. God is listening
"This poor man called and the Lord heard." Psalm 34:6
"His ears are attentive to their cry." Psalm 34:15

2. God will give you wisdom
Ephesians 1:17, James 1:5-7

3. When we don't know what to pray for God's Spirit will interceed for us
Romans 8:26

4. His Will is done
Romans 1:10, Matthew 26

5. Jesus did when He was overwhelmed and sorrowful (yes, He felt these emotions!)
Matthew 26:38

6. It can keep you from falling into temptation
Matthew 26:41

7. God will reward you
"When you pray, go into your room, close the door and pray to your Father who is unseen. Then your Father, who sees what is done in secret will reward you." Matthew 6:6
I don't think this is speaking of a reward as we think of a reward. I think the reward has to do with the fact that we are in correct relationship with Him through prayer.

8. Prayer leads to peace
"Do not be anxious about anything, but in everything by prayer and petition, with thanksgiving make your requests to God. And the peace of God, which transcends all understanding, will guard your hearts and minds in Christ Jesus." Philippians 4:8-9

Over the past few months, I have questioned God with my doubts and fears and whys? He has answered some, perhaps not all of my questions. Undoubtedly, inspite of my questions, He remains God. The same today, yesterday and forever. I have had to work out my faith, I have been forced to ask the hard questions and I have come to the conclusion that I trust Him. I may not understand everything He does. His ways might not fit my "expectations."

I am still in the midst of a struggle, for I desperately want God to heal my child. I'm not sure how He will answer. Regardless, He remains God. I am thankful He can handle my questions, my fears and my doubts. I need not explain Him or prove Him. I will however, continue to cry out to Him. I know He is listening, I know He understands how I feel, I know His will will be done, and I have felt the peace that comes when I turn my fears and anxieties over to Him in prayer.

Wednesday, May 5, 2010

Symptoms of laryngeal cleft

So what in the world is a laryngeal cleft? I'm glad you asked. There are four classifications of clefts. ENT's use a measuring system to classify the type, such as Benjamin and Inglis's classification scale (see link). My son Henry has a type 1a laryngeal cleft. A laryngeal cleft is a communication between the "tracheal and esphogeal axis.[1]" These two structures are normally completely separate. A cleft allows liquids or food, to enter the lungs rather than passing straight through the stomach via the esophagus. Aspiration occurs when a foreign substance enters the lungs. Since infants or children with clefts are chronically aspirating; they typically present symptoms such as chronic cough, wheezing and recurrent pneumonia. The severity of symptoms may vary between patients. While one child may be in and out of the hospital with pneumonia and recurrent respiratory infections, another child with the same level cleft might only have minor symptoms and be relatively healthy. Many parents report that their child has a "rattle" sound in their throat or that they feel a rattle in their child's chest when they breathe. Unfortunately, these symptoms mimic other common childhood illnesses like reflux, asthma and allergies. This overlap in symptoms often delays diagnosis and many parents become frustrated in the interim.
If your child has some or all of these symptoms it is important to keep a journal of symptoms and when they occur. Consider keeping track of your day and what your child eats and drinks. How does he/she sound before she eats? How does he/she sound after? Does your child tolerate certain foods/drinks and not others? When did the symptoms begin and how long have they been going on? Keep track of phone calls you make to doctors and tests that your child has done. This way you can keep your child's information in one place and have one file to show other health care professionals. Keep in mind that you are your child's advocate. If you feel that a doctor is not listening to you, tell them how you feel, if they still don't listen, change practitioners. Be persistent. If you know that something is "just not right" with your child, keep track of the symptoms and keep the doctor informed of your concerns. Consider finding an expert. For instance, if your son continues to have respiratory problems and the pediatrician doesn't seem to know what to do, do some research and take your son to the best pediatric pulmonologist (lung specialist) in your area.
Some important tests in diagnosing laryngeal cleft might include: Modified Barium Swallow Study to diagnosis dysphagia (difficultly swallowing) and aspiration; Upper GI series to differentiate between reflux and other congenital anomalies such as tracheal esophageal fistula; PH probe to diagnose reflux. The doctors might run other tests such as an MRI to rule out central reasons for aspiration or endoscopy to assess the GI tract and other causes for swallowing problems.
The only definative way to diagnose a cleft is with a bronchoscope. This is a scope of the airway which is done under anesthesia usually by both the pulmonologist and ENT doctor. If your child was just recently diaganosed with a cleft, please see my links list for a support site and more information.

Disclaimer: the above information is based on personal experience and research. If you have concerns about your child's health seek medical advice.

1.Laryngeal Cleft
Stéphane M. Pezzettigotta, Nicolas Leboulanger, Gilles Roger, Françoise Denoyelle, Eréa-Noël Garabédian
Otolaryngologic Clinics of North America
October 2008 (Vol. 41, Issue 5, Pages 913-933)"

Sunday, May 2, 2010

G-tube drama

My baby has a G-tube. In many ways it has has been a blessing.  Henry has finally started to put on weight and is growing again.  His lungs now sound clearer than ever and that is a huge relief after months of coughing, congestion and wheezing.  The challenge now is, as a eleven-month-old boy, he is starting to crawl everywhere and is pulling up on furniture.  The feeds he gets throughout the day run over an hour; so every three hours I have to hang a new bag. He has an hour on the pump for his feed and then about two-half-hours off.  It makes for an interesting day. 

The other day he was crawling around and the tubing became disconnected.   He turned the corner down the hallway and I was following a trail of milk that was seeping out of his body!  It's hard for him to be mobile since I have to push the pump around with him all day long as he crawls around the house.  As you can imagine this also makes it hard for me to get much of anything done.  The day consists doing small spurts of quick mini-chores while attempting to avoid impending disaster. 

It goes something like this: Put Henry in his bouncy seat.  Start to empty dishwasher.  Henry starts crying. Stop what I am doing and put Henry on the floor.  Start to empty dishwasher.  Henry starts crawling away.  Push the pump towards him.  Take out a dish.  Push the pump closer.  Take out a spoon.  The tubing is stretching.  One more fork.  The tubing is stretching more.  Just put away a cup. QUICKLY!  AHH! The tubing is disconnected! Henry is off down the hallway.  Milk is leaking!  Catch Henry.  Reconnect tubing.  Carry Henry and the pump back to the kitchen.  Give Henry something to play with.  Hurry and clean up the spilled milk trail. Run back to Henry. Push the pump closer to him. Now hurry and empty the dishwasher.  Yeah right! Repeat everything all over again.

So, at that rate it takes about three hours to empty the dishwasher!  Ahh!

It's also hard to go anywhere because I have to feed him so often and it's not easy to take four kids and a feeding pump to the bounce house or the zoo for that matter!   So for those of you who come to visit me--THANK YOU SO MUCH!  And for those of you who are yet to visit me, you have fair warning--my house will not be clean, my laundry will not be done, BUT the dishwasher will be partly empty!