Wednesday, December 28, 2011

Met My Match

Yesterday, Leo and I were at the pediatrician and he stated, "You have finally met your match in Little Leo!" Yes, it is true. Leo is giving us a run for our money. We knew his medical needs would be a lot, but I don't think you can fully understand the magnitude of the needs until you daily live them.

We have had a cold, virus, yucky thing go through our house. Everyone has gotten it to some degree. Jonathan was sick, really, really sick for 7 days. Sick as in he didn't move from the sofa except to go to the doctors. Tyler, Jordan, and Ben just had the cold symptoms of the virus. Amanda sick but not too sick. Leo got it good! So good, we visited the ER of Christmas Eve. Thankfully, we were home 4 hours later. Wheezing under control and antibiotic for busted eardrums.

Christmas was celebrated! We were together as a family and that was all that mattered.

On a side note, we received a call from our cardiologist on Christmas Eve, yes Christmas Eve. He left a message stating that he had the results of Leo's heart monitor test (which was done in October and he had already given us results)and needed to talk to us. This message on Christmas Eve!!!! Thankfully, we had an email address for him and emailed. He called us back (while I was at the ER with Leo) and Jeremy talked to him. Apparently, they send all heart monitor tests out to be evaluated by a team of doctors. This takes 3 months? Anyway, this team thought Leo's heart rate was too high ALL THE TIME! They would like him to redo the test. So another heart monitor is being sent to us to wear for another 24 hours. In the mean time, while we were at the doctor's yesterday, we had blood drawn to test Leo's thyroid and for anemia both of which can cause a high heart rate. Trying to rule things out or in this case a thyroid problem or anemia could be our best case scenario.

Tomorrow or Friday- a happy post about this week. Our after Christmas plans had to change but it has turned out to be a good week.

Tuesday, December 20, 2011

Missed my paramedic friends...

Last night at about 12:45 AM Leo had a seizure. I had just changed his diaper about 5 minutes earlier and he felt fine. He started coughing and then a gasp and nothing. Jeremy got up to check on him and yelled that he was seizing. Thankfully, we both remained calm and did what we had been told to to if this happened. We did wind up giving him the one seizure medicine after 5 minutes of seizing. He then did what is typical of doing after a seizure- he fell into a deep sleep. This just made Jeremy and I more nervous as we were trying to access if he was alright. Jeremy stayed up doing some work and watched him sleep for a while after to make sure he was alright.

I actually missed our paramedic friends. In the past they have taken control and all we had to do was pray and worry. Today we will be taking a trip back to our pediatrician this time with Leo. Besides the seizure, he also has the cough which sounds deep and crackly. We also need instructions on how to keep his fever under control so that it doesn't result in a seizure with each spike.

Jonathan is still spiking fevers and coughing. Please pray for healing for our two youngest. It is no fun to be sick especially this time of year.

Monday, December 19, 2011

Will the real mother stand up?

This is one of those posts where I know what I am supposed to think and do, but hey, I'm only human and sometimes (ok, a lot of times) I struggle. Last week we were informed that Leo's birth parent's rights will be terminated in January. We know the specific date. We are not supposed to go to court. Leo's birth mom and birth father do not need to go to court. In fact, only our lawyer needs to show up. Leo's birth mom signed papers placing Leo for adoption back in May. This is the formality of the judge officially terminating the rights. After this occurs, our lawyer will enter our intention to adopt.

This is where my mind goes down hill fast! Formality or not- the fact remains this would be the easiest time for his birth mom to change her mind and perhaps convince a judge to give her custody. I doubt this will happen. Our Social Worker assures me this most likely won't happen and even if it did - I am reminded she did already sign papers. But like I said- I struggle. I admit it will be a struggle for me to not worry until I hear from our lawyer saying everything went well in court in January.

My mind has wandered to the story of the two moms in I Kings 3: 16-27. It was the mom who chose life for the baby boy who Solomon deemed the "real" mom. This mom wasn't selfish. She would rather see her son raised by someone else then see him killed. She thought of her son before her own wants or needs. She was willing to give her son life even if it meant a life not with her. It says she was deeply moved out of love for her son.

This mom reminds me of Leo's mom. She made the greatest sacrifice in realizing she could not give Leo the care he needed/deserved. She thought of Leo's needs above her own desires. How easy would it have been for her to raise Leo, but she knew that he needed more then she could give. He needed more then love. I know she was deeply moved out of love for her son (Leo) and that is why she chose adoption.

Don't worry, I am not going to try and compare myself to the other mom in this story. We will just focus on the mom who chose life. What do I do with all of this? It spurs me on to provide the best possible care for Leo. If we only provide love then we are not doing anything his birth mom couldn't do. Leo has a complicated medical history. One that is demanding and requires lots of appointments and therapies. It is our responsibility to both Leo and his birth mom to provide him with the best medical care possible and all the therapies he needs. This can be tiring and draining, but it is what we need to do. It is what we do for our children. It is what I do for my son, Leo.

So, if we were seated in a room and someone asked for Leo's "real" mom to stand- there would be two of us standing. For we both are his real mom- our love and care just looks different.

Totally unrelated note- could I ask you to pray for Jonathan. He has been spiking a really high fever all weekend and having coughing fits. I took him to the doctor and he is having bronchial spasms. He should be better in a few days, once it runs its course and they gave him an inhaler which should help. Please also pray no one else gets it- especially Leo. Any virus or bug that causes him to have difficulty breathing could land us in the hospital and there is of course the worry of Leo spiking a fever and having a seizure. I have been taking his temperature all day. Thank you for all your prayers for our family!

Tuesday, December 13, 2011

He owns the catttle

This is a post I hesitate to write because in our culture one does not discuss personal finances with anyone. BUT, one of the reasons we have kept this blog going is because we have witnessed how at least 4 other families have decided to adopt or switched to special needs adoption after reading Jonathan and Leo's journeys. If God can use our written words to encourage someone to adopt then we will continue to write.

Anyone who has investigated adoption at all will know it is expensive. This is often the biggest excuse people make for not adopting. Early on in the process of adopting Jonathan, Jeremy and I decided that we would not take out any loans to pay adoption expenses. We stuck to that and watched God provide. We received grants from organizations, we cut back our own spending, we had a huge garage sale, and we depleted our savings. The most humbling thing was receiving money from individuals who told us that they felt led of God to give to our family. Sometimes we received anonymous money orders or cash in the mail. God provided.

Now fast forward to Leo's adoption. When our Leo story began, we were still in the process of building up our savings. We were thinking that we would have at least a year before we had to pay for any adoption fees or travel (initially we had begun the international process). Here's the thing: God had a different plan for us. His plan involved us adopting Leo. Here's the surprise: because Leo came to live with us right from his birthmom and never entered “the system”, his adoption went through the healthy infant program. We quickly learned that adopting a healthy infant can be expensive. We were upfront with our social worker and told her that we didn't have the money to complete the adoption. Her response? The important thing is that Leo has a family that loves him. In the end, we did receive two grants from Bethany, a number of their fees were waived, we received another grant from SHOW HOPE, we once again depleted our savings, and once again God provided in unexpected ways. This time God used individuals who provided clothing and toys for Leo. (We had gotten rid of all things baby as we were sure our adoptions would be of toddlers or older!) God used at least 1 individual to send us a gift card at just the right time that I needed go go buy some things specifically for Leo.

Leo's adoption is still not final. We are still waiting for paperwork to be completed and for our day in court when a judge will introduce Leo Shafer for the very first time. We will have to pay the lawyer at that time. Do we have the money to pay him just sitting in a bank account waiting to be spent? I would love to say that we did, but the fact is we don't. God knows how it will be provided. In the end I believe God will provide as long as we do our part. Our part is saving what we can, and cutting back spending.

Why do we share this? I believe that often we limit God. We believe God only wants us to do what our finances will allow. If we had waited until we had enough money to adopt Leo he would most likely now be in the foster care system. I am not saying all this to pat ourselves on the back, because we know just how flawed we are. We hardly have it all figured out. We have so many areas that we need to grow in! Some may call us irresponsible, but we believe that God called us to adopt Leo and and that He will provide. He has provided so much already! This brings Him glory. Don't let money be the one and only obstacle between you and whatever He is calling you to!

It has been amazing to sit back and watch the relationship between Ben and Jonathan.
Our therapy homework- play with food!
My boys!

Wednesday, November 30, 2011

snuggling with my blanket or what is God asking you to do?

Most days I can pretend all is well. That I have 6 healthy children and life is going according to plan. The problem is that packages like the ones that arrived today force me to face reality. The reality that I am a mom, a mom of a special needs little boy. Today Leo's medical supplies for the month arrived. 6 cases of special formula, lots of syringes, microlipids, and the list goes on. There was an extra box this order. A box that actually made me smile until I did a little research. This box contained Christmas gifts from the supply company for Leo. A homemade hat, a fisher price toy and a homemade blanket. The blanket had a Project Linus label sewed into it. I googled Project Linus. It is a wonderful organization.

From their website- “As Charles Schulz’s Linus character from the PEANUTS® comic strip was comforted by his blanket, Project Linus strives to do the same and more for children who are seriously ill, traumatized, or otherwise in need.”

Leo received a project Linus blanket. I started to ask myself - “why?” Is he seriously ill, traumatized, or otherwise in need?

I was reminded of the fact that I push to the back of my mind on a daily basis- Leo has Wolf-Hirschhorn syndrome. By virtue of having WHS, Leo is considered “seriously ill” by some.

Things we were told before Leo came to live with us.

It has been estimated that approximately 35% of individuals who have WHS die within the first two years of life. Universally, children with WHS have severe or profound developmental retardation, however, there are many affected individuals who are able to walk and some that are able to talk in short sentences. It is evident that many patients seem to proceed farther than was previously thought possible. You can read more about WHS here

So why am I surprised that Leo received a blanket from Project Linus?

The reality is that I can't think about what tomorrow holds for Leo. Jeremy and I accept the fact that Leo will most likely live with us for the rest of our lives. Retirement without kids is most likely not in our future. And that is OK.

I can't focus on Leo's prognosis. I can only focus on what I have to do today. My day just looks different than most. I homeschool, I clean (most days), I cook, I get kids to their activities, but then I also administer feeds via a tube to Leo, I change his dressing, I clean,fill and run his feeding pump at least 6 times a day, I administer medicine, I am constantly going to specialists, I work with him and his therapists with the goal of helping him reach his potential.

I can't complain. We chose this. We said yes to Leo. Most moms of special needs kids didn't get a choice. I did. We could have turned down his file and no one would have thought any less of us.

Here's the thing- It isn't about us. It's about a little boy who needed a family, who happens to have a rare genetic syndrome. We are blessed as a family. Yes, Leo has changed the dynamics of our family. Yes, his special needs can complicate plans at times. But it isn't about me having an easy life. It isn't about us some day retiring to an island without kids. It's about doing what God has called us to do. It's about sometimes choosing to do the hard thing because you know it is the right thing to do. Life with Leo is hard on so many levels, but thankfully we aren't on this journey alone and as the poem goes, when there is only one set of footprints in the sand- It is then that God is carrying us.

So tonight, I might just snuggle up with the Project Linus blanket and thank God for allowing me to be mom to 6 wonderful children who are all special to me.

What is God asking you to do that is hard? We are not special. We are not super godly. God asked us to adopt Leo. What is God asking you to do that is hard? He will carry you when you need to be carried and who knows He might even send you your very own “Linus blanket” to comfort you when you obey and life gets hard.

Monday, November 21, 2011

Cutest Boy Named Leo

Isn't he just the cutest little boy?
He is so happy to not have a tube dangling from his nose! Who wouldn't!

We are back to working on eating and drinking from a cup. Baby steps. Goal- eating by mouth!

What a handsome guy!

Thursday, November 17, 2011

Looking Good

Yes, it is 5:30 as I type this but I actually slept last night. They didn't have Leo hooked up to the monitors so I didn't hear beep, beep, beep all night long. Leo also has a quiet roommate.

It took him 3 full days, but Leo finally got his IV off. Quite the accomplishment and one he is very proud of. He has a reputation for getting them off and they practically had it ducked tape to him. He is lucky his favorite nurse isn't in today or she would have words with him. I believe her exact words were, "Leo is a worthy opponent!" Apparently, Leo may have won the battle!

Full feeds today. Hopefully starting with the 9:00 AM feed. If he does well then we are out of here!

In other God news. Leo's 4th roommate is a little girl, who was adopted from Africa. How cool is that? Only God could have orchestrated placing these 2 adopted little ones in the same hospital room. She should also be discharged today. Praying, we go first as I really have no desire to meet a 5th roommate!

Wednesday, November 16, 2011

Getting Around

Like the wheels? The nurse found us this cool almost like a Kohl's shopping cart to go for a walk in! Leo enjoyed walking the halls and seeing people other then me and the 4 walls.

After our walk, Leo fell fast asleep.

He is doing very well. Last night lots of beeps were heard as he kept setting off his monitors. They finally called the doctor and got permission to take him off the monitors and so no more beeps for now. Today they increased his feeds to 2/3's and so far so good. We skyped again with the kids at home which the boys especially enjoyed.

Being here has reminded me how blessed we are. Our children are healthy, yes Leo has multiple medical issues but he is healthy. We have seen so many kids who are a lot sicker then Leo and who have been here a long time with no discharge date in sight. I am also so thankful that I am able to be here with Leo around the clock. It broke heart yesterday to see a baby only a couple of months old sitting in a seat in the nurses station. His mom has to work and so he is here by himself with just the nurses to look after him and love on him. I discovered that Leo is in the minority of having a parent with him around the clock. We are so thankful for Mom-mom for basically moving in and taking care of life on the home front. She is doing an awesome job keeping things "normal" for the kids. We know this is hard on the other kids and so we have worked to not uproot their lives this week. Jeremy has been home to tuck them in, to take them to chess club and even to help with school work.

The end is in sight. Leo should be discharged late tomorrow. Tomorrow they will increase his feeds to the normal amount. They will check his blood sugar after 2 of the feeds and if he is tolerating everything, they should kick us out!

This weekend Amanda is performing with the Bucks County Community Orchestra. She plays the violin in their Concertino Division. We are hoping all of us can go to at least her portion of the concert. She has really excelled in her violin playing this year and we are so proud of her!

Monday, November 14, 2011

God is Answering!

We are in a room. The plan was once we were moved to a room, I would take a nap before Jeremy left, but apparently someone stole the sleep sofa from the room and it can't be found. So no nap for now- kinda makes me laugh as the nursing staff is completely perplexed by who took the sleep sofa- it is heavy! Leo also has a teenage boy for a roommate. Should be an interesting night.

But I digress to what you really want to know. Thank you so much for praying. God heard and answered! Leo did great. It has been a LONG day, but God is good. Surgery began about 7:30 and we got to go see him about noon. Each surgeon was please with how his part went. They were all alerted to Leo's past breathing problems and took special care with him and slowly woke him up. He has a little oxygen but not enough to cause concern. We will definitely be here till at least Thursday. Thank you all for praying and please continue....

Sunday, November 13, 2011

Time to Pray

Tomorrow we need to be at CHOP by 6:00 AM. Please pray for the 3 surgeons involved in Leo's surgery. Please pray that God will guide their hands and give them the wisdom they need. Please pray specifically for Leo as he comes out of anesthesia. The last 2 times Leo had surgery, he had a lot of difficulty breathing after anesthesia. Please pray specifically that he will have no breathing difficulties after this surgery. We really appreciate all your prayers.

Thursday, November 10, 2011

Legally Clear

Just got word- we are legally cleared for surgery. Yes, you read that correctly. It has been quite the ordeal to get Little Man, Leo- legally clear for surgery. The reason for the ordeal is that technically our adoption agency has guardianship until the adoption is final. They have signed papers giving us permission to seek medical care and sign any medical forms. Apparently, the legal department has scrutinized this case making sure all i's are dotted and t's crossed. We also had some confusion because 3 departments are involved in this surgery and 2 were talking to legal and the agency. No one realized they were talking about the same little boy- kinda humorous if you ask me!

We are also cleared medically-as I had a phone interview with the anesthesia department yesterday. The frustrating part- nothing, no nothing was documented about the breathing difficulties Leo had after surgery in August. Difficulties that landed us in Intensive Care. The very nice women made some notes and we will also be talking with the anesthesia doctor before surgery. Now- we need to keep little man healthy till Monday morning!

Please begin now praying for Leo (and us) as his surgery is scheduled for Monday and it will take 3.5 hours to do all 4 procedures. 3.5 hours is a LONG time to be under having doctors work on you! We will be in the hospital at least 3 days.

We also had a visit with Leo's birthmom this week. I was hoping this visit would be easier, but it wasn't. I left emotionally drained. Good-bye is the hardest. She was very happy to see how much Leo has progressed and had fun playing with him as he rolled all over the place. I am still processing the visit. The bottom line- Leo is one loved little boy!

In the midst of our new "normal", schoolwork is still happening but the greater lessons have been learned just living life!

Wednesday, November 9, 2011

2 years ago

Photo and video editing at
If you get the blog via email you need to go to the blog to see the video :)

It was two years ago today that Jonathan stole our hearts!
This is my favorite video of our time in China.
He has lost his baby look
and is now a big boy, my big boy!

Saturday, November 5, 2011

M&M Uno

We had a lot of fun this evening playing M&M Uno. If you find yourself looking for a way to keep a couple of children entertained, let me suggest this fun game. It's a creation of our very own, and it works like this:

  1. Before the game can begin, everyone must WASH THEIR HANDS.

  2. Each player gets a dixie cup with 10 to 15 M&M candies in it. It is important that each player has the same number of candies in his/her cup.

  3. A bowl is set in the middle of the table. This is the candy bowl.

  4. Deal out the Uno cards like you would for a normal game.


Play a game of Uno according to the standard rules of the game. Four additional rules govern the distribution of the M&M candies.
  1. Whenever you are required to draw a card from the Uno deck, you must place one of your candies in the candy bowl.

  2. Whenever you change the color of the top Uno card, you win all the candies in the candy bowl.

  3. If you win the Uno game (that is, you play your last card) you win all the candies in the candy bowl.

  4. If you run out of candies in your dixie cup, you lose. Just set your cards down and stop playing.
Frequently Asked Questions
  1. Can I eat my candies now? You sure can. You don't need to wait to the end of the game to eat some (or all) of you M&Ms. But, of course, if your dixie cup is empty, you lose and you are out of the game.

  2. If an opponent makes me draw four (or 2) cards, do I have to give away one of my candies? Yes. One of your candies goes in the bowl regardless of how many cards you were made to draw.

  3. If I change the color by playing a wild card, do I get all the candies in the bowl? Yes.

  4. If I can't play because I can't match the top card, do I have to put my candy in the bowl? Yes. You have to draw a card and put a candy in the bowl.

  5. Hey, I drew a card, played it, and changed the color being lead. Do I get all the candies in the bowl? Even the one I just put in? Yes. You changed the color. You get all the candies in the bowl.

  6. I changed the color, but the candy bowl was empty. Do I get anything? Nope. Sorry.

  7. I played a skip card. Does the person being skipped need to put a candy in the bowl? No. They just get skipped. That's bad enough.
Give it a try the next chance you get. It's fun!

Wednesday, November 2, 2011

Why Was This Child Born Blind?

Why Was This Child Born Blind?
By John Piper. © Desiring God. Website: desiringGod.orga

This is probably the only sermon I have ever heard that talks directly about children with disabilities in such a direct way. It is a must to listen to. I love the line where John Piper says- "If you want to be one of the most remarkable kinds of human beings on the planet—a Jesus kind—see people with disabilities. See them. And move toward them. God will show you what to say."

Please take the time to listen to this sermon. It will challenge you to look at suffering in a whole new light.

Today Leo and I spent the morning with the neurologist. It went very well. Will update more on that later. Time to put little man to bed! I think he is done playing....

Tuesday, November 1, 2011

Will You?

This time 2 years ago, I was busy pulling everything together and packing for our journey to our amazing son Jonathan. Here he is on gotcha day eating french fries!

On November 9th, we are splurging and going out to dinner to the Chinese Buffet to celebrate Jonathan's Gotcha Day.

WOW! It doesn't seem possible that he has only been a part of our family for 2 short years. What seems even crazier is that he now is a big brother to Leo.

November is National Adoption Month. Both of our boys were considered hard to place. If you remember, we were matched with Jonathan before our paperwork was done because they couldn't find a family for him and his file was about to be returned to China. (meaning his chances for adoption would have dropped significantly) If you have ever seen Jonathan in action you know he is not hindered at all by his "special need". He is one of the most amazing people I have ever met. His personality, his determination, his spunk... and to think so many families turned down his file just because he was missing his leg.

Fast forward to April,2011, our paperwork was started, but not completed and again we receive a call about a little boy who desperately needs a family and Bethany has run out of options for him. Leo becomes part of our family. We are still waiting for the day when legally he becomes a Shafer. It's just a formality. Leo is a Shafer. After all, he looks just like his brother. His smile, his giggle, the light in his eye... yes there is more to Leo's care but we would and will do anything for this little guy. He deserves a mom and dad who love him. He deserves a mom and dad who will advocate for him and get him the best possible medical care. He deserves a family.

So, what about you? This November will you consider adopting? This November will you consider foster care? This November will you consider supporting a family in their journey to adopt? There are so many ways to care for the orphan. Will You?

Wednesday, October 26, 2011

So thankful to be home!

To say we had an eventful weekend would be an understatement.

Our weekend began Friday night with a trip to our local ER because Leo was having difficulty breathing- got him breathing- sent us home.

We were in the door literally 5 minutes and Leo had a seizure due to spike in fever.

Short version- ambulance ride to a different ER where we were admitted- total of 4 seizures occurred. In case you are wondering seizures are scary especially when your 17 month old is having one and you are home alone. A special shout out- to our local fire and ambulance company. We need to make and take them cookies as a thank you! This 911 call had a full size ladder fire truck at our door before the ambulance.

Discharged from hospital on Sunday morning.

Visited our pediatrician on Monday morning b/c Leo was back to not breathing right.

Sent to our 3rd ER where they gave him some more medicine and sent us home.
I think we have finally turned the corner. He still has snot, he is still breathing heavy, but he is breathing and that is all that matters.

We will be seeing a neurologist next Wednesday about the seizures and deciding what to do about so many seizures. For now we have special medicine to give him in the event of a seizure between now and Wed.
We are soooo thankful for friends and family who have stepped in to help us and take care of the other kids while we were at the hospital with Leo.

Please pray that Leo will be healthy enough to have surgery on November 14th!

Wednesday, October 19, 2011

Praising God!

Thank you to all who prayed that we would receive answers at Leo's appointment today. God really out did himself!

I feel like the weight of the world has been lifted from my shoulders! Today, Leo and I met with an awesome doctor, his 2 side kicks and a dietitian. The doctor literally just sat and watched Leo do a tube feeding for a half hour. As he watched him, he just kept saying "this isn't right, this isn't right!" They hooked him up and monitored his heart rate during the feed. They checked his blood sugar. They LISTENED to me and saw first hand what I was saying. We were with this team for almost 2 hours! Bottom line- Leo is being over fed on the wrong type of food. They sent me home with a case of new formula to try. We also scheduled surgery to have a g-tube put in and a fundoplication done. They really showed compassion for Leo and all he has been through.

I have been trying to set up Leo's eye surgery and bronchoscopy for literally 3 weeks and I have been getting the run around. Apparently, the doctor we saw today has rank because within minutes of his surgery being scheduled for November 14th, both the eye doctor's secretary and the ENT secretary jumped on board and both of these surgeries will be done on the 14th.

So, November 14th will be a huge day as Leo will have 4 procedures done. He will be in the hospital for at least 3 days. I am still waiting to talk to the Cardio doctor, BUT amazingly he called while I was driving home and should be calling me back shortly. (it might have had something to do with him being emailed by my new favorite doctor about the upcoming surgery and needing clearance:)

I feel like we are headed in the right direction and I really think a huge part of Leo's medical riddles were untangled today!

Saturday, October 15, 2011

Before and After

Soccer in the morning....

Dressed and ready to go...

to Bethany's Annual Fudraising Banquet!

From our standpoint, the night was a success! Jeremy did a great job sharing from his heart and many people commented afterwards on what he said. Although, we will be honest and say we did feel a little out of our league at the banquet.

Saturday, October 8, 2011

Beautiful Fall Day!

We spent the morning out at the pumpkin patch and picking apples. It was such a glorious day- the weather couldn't have been more perfect. Pop-pop, Mom-mom and Andrew joined us as we all traveled to and from in what Andrew calls the "bus". Pop-pop treated us to lunch afterwards which was a wonderful treat! Now we are headed down to a carnival and concert at our church. Jeremy, Amanda, Tyler and Jordan have already headed out as they are making balloon animals at the carnival. So much to be thankful for today!

Monday, October 3, 2011

Never got the memo

I don't think God received the memo where I decided at a young age that I had no desire whatsoever to go into the medical field. My strengths are NOT science and math. I am in awe of medical technology, but really have no desire to completely understand how the heart works or how to place an NG tube.

So, I just found myself laughing in the cardiologists office today as he was telling me they were going to teach me how to take and keep track of Leo's pulse. Fortunately (for me), Leo is too chubby and the doctor had difficulty finding his pulse on his little chubby wrist and declared if he had trouble then I would not be able to do it accurately. I readily agreed thinking I was off the hook. No, instead of learning how to accurately take a pules, I learned how to work a heart monitor! Leo will be attached to the monitor for 24 hours. I just have to write down every time he changes activities in a log and when it shuts itself off in 24 hours I have to remember to fed ex it back to the doctor.

Why a heart monitor?- Leo has a high heart rate. We are trying to figure out if it is high all the time or just in the presence of doctors. I also learned that he has a slight hole in his heart that should have closed by now but hasn't. We will go back in a year to revisit the hole and if it has not closed we will talk surgery at that time. I now understand how the heart should work and how Leo's is working as I received a mini science lesson during our appointment. I almost asked if I could bring in a group of home school kids for this lesson but decided against it.

I have decided that by the time Leo is twenty I will have an honorary medical degree or at the very least enough knowledge to pass the test to get into medical school.

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.