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365 days

 

This was one year ago at Baylor Hospital's inpatient feeding clinic

This was one year ago at Baylor Hospital’s inpatient feeding clinic

Hello world. Happy New year!

How great is our God! It’s been a year since we checked into the feeding clinic at Baylor.  One year ago today I felt like I was sent to prison and our family was again separated. Although I don’t give the feeding clinic great reviews, we learned a lot.  And I am trying to focus on that.

 

 

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We finally found a GI doc that understands Gabi!! Praise God! Dr. Channa reminded us to keep perspective and taught me how to increase calories on the things that Gabi is actually able to eat.

Gabi has lost some weight and isn’t growing like she should be.  He height was the same at 36″ and her weight was at 37 lbs. I felt like a total failure.  I still do.  The doctor continued with the diagnosis failure to thrive.  Even though we have heard those words over and over again, it still is like a knife in my back.  I feel responsible and I feel like a failure.  But the new doctor understood and gave me hope, encouragement and some ways to help. Adding olive oil and butter, lots of butter, to everything.  Adding protein powder and taking vitamins will help.  But it’s not easy to make Gabi seperate meals. It’s just not easy with 4 other children. She drinks half and half for her milk. It’s just not easy and I don’t do a very good job of it.

IMG_1216We had to increase her G-tube feedings but we do not have to go back to the nighttime pump.  Thank our good Lord. I have not continued with the additional private therapies because it is SO expensive and pulling her out of school 2 mornings a week is hard. But in the future, I do need to bring her back for the vital stim treatments at least. It’s a new year and I know Gabi will take additional strides! She is due for a swallow study soon…

 

 

 

Cardiology

Her heart function is good, stable right now.  Praise God!

I cannot emphasize how many blessings Gabi brings to our family.  Each one of our children is a blessing but just when we get to our breaking point, another blessing  is bestowed on us. God is so great. From helping with medical payments, to enjoying family time with others that understand and are going through similar trials, to the trip of a lifetime- we are so incredibly blessed and I am so humbled by the wonderful people that work to run organizations like these-

Kenna’s Kids

So, there is this amazing group of people that started Kenna’s Kids.  I am so proud to say that they are my friends and I am honored to say that I know Kenna personally. They chose Gabi as one of their 2015 recipients and now in 2016 we can pay it forward!  We are so grateful to Kenna’s Kids! Please check them out and help if you can.

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Camp Jon Marc

What an amazing this camp is! All of the Baylor feeding clinic patients get invited to a weekend campout to the middle of no where Texas to Camp Jon Marc. It is a camp designed for special needs kids and the memories bring me tears… it was that awesome. God has brought SO many special people into our lives and I LOVE how it is affecting my other children.  I should write an entire post on this camp.. that’s how amazing it is.

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We did archery, fishing, ropes course, arts and crafts and just got to spend time with the family.

We did archery, fishing, ropes course, arts and crafts and just got to spend time with the family.

DISNEY!!!

Gabi had her Make A Wish trip and I don’t think I have to say to you how amazing it was!  These volunteers at the resort and those that coordinate the trip truly make God smile.  What an amazing organization!  Truly we had the time of our lives and like the skywriting says- Love God- We love God and all the blessings He has brought to our family.

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I mean, seriously, from starting the year in the hospital to finishing it off at Disney World… I have no words just praise!

Much Love always,

Teri

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5 more weeks!

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Chicago has it’s first snow today so I thought I should give an update here,

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We are settled into our new home, although it still feels like we just threw our stuff down and where ever the furniture landed is where it’s staying and for the most part, I’m OK with that. Living next to our church has brought us physically closer to our worship space and the people we worship with, and the proximity has brought us even closer to our faith. We left the comfort of our neighbors, we left the comfort of having a long term plan but hearing those church bells ringing every hour truly reminds me that everything is going to be OK.  It’s been sad, traumatic but also a true blessing!

 

 

 

 

We survived Halloween! Ethan jr. went trick or treating with his friends for the first time. It was big moment for them and they did great! If you don’t know my feelings towards this “holiday”, please read last years post

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Since our cats are being boarded ay my mother’s house, we invested our emotions, time and money into a few new pets. Guinea pigs!!  We have been adopted families of 3 adorable guinea pigs and we have 1 survivor.  Trixie is our survivor. Charlie and Daisy have passed on to Guinea Pig Heaven. It’s been good life lessons for the kids here as far as grief and loss.

We finally got in to the Lurie Children’s Hospital Feeing Clinic.  We had our initial appt and my excitement was temporarily crushed but by God’s wonderful grace, Gabi is now eating up to 18 bites per meal!! All 7 or so clinicians evaluated Gabi and asked me lots of questions for over an hour and then they excused themselves to discuss the best plan for my dear Gabi.

We had:

  • a psychologist
  • 2 nurses
  • 2 Feeding/speech specialist
  • GI doctor
  • Dietician

They all came back and my excitement wasn’t hard to hide.  Dr. Fishbein sat down and sighed.  I know when the doctor sighs, there is a gut punch coming soon.  I closed my eyes and said 2 quick prayers. One prayer was for strength to keep the tears at bay and for wisdom to speak clearly to this team of medical professionals. The second was for my sweet Gabi.  A prayer for help. Please be with her.

Following the despairing exhale, Dr. Fishbein explained to me what an outpatient program is.  Did I look new to this?  He then explained to me that we have no starting point with Gabi. They couldn’t find a place to begin the feeding clinic for her. He went on to ask me if I was willing to travel. That is never a good question in medical explanations.  He explained that an inpatient program would be best for her. I quickly thought to myself… OK, how bad can this be? Travel to where? Ohio, MI, WI? As long as we could drive… But would we have to fly?How much our airplane tickets? How could we possibly afford this? Slow down, slow down…

Dr. Fishbein said there are 2 wonderful clinics. One in Indiana, one in Maryland.  Indiana, I thought?  Awesome, we can do this.  Evansville, IN.  6 hours drive. Oh.

“How long would this be?” I asked him, thinking and hoping he was going to say 1-2 weeks.

6-8 weeks.

I couldn’t possibly. The other kids? School? Max?  How could we possibly do this?

photoI took a deep breath and again prayed for strength.  OK.  “Are there any other options?” I asked. Before he got a chance to answer, I was blessed with wisdom as I rephrased my question. “Would it be possible for us to try the outpatient program here and FIND a starting point for her?”

“Well, the swallow study was years ago and I don’t trust those results.  We don’t know what is physiologically going on with her. I don’t want to make guesses.” He said.

The wisdom poured out of my mouth. I don’t really remember what I said but I did convince them to take her as a new feeding clinic patient.  I eloquently spoke … without any tears!!….and said something like this- Gabi has endured every negative outcome that was possible but she has fought and she has defeated all odds.  Please just give her a chance.

They did. And we have been there for 5 weeks! They agreed to reassess her standing after 5 weeks and they have given her another 5 weeks!  Molly, our SLP, is thrilled with her progress! She has a long way to go but we have proven to this team that Gabi will prevail!

We work hard… and the inpatient program is not off the table but right now, we are getting the help she needs. We have appts made until Dec. 18th.  The team keeps saying that we will hit a wall soon and will need further help and guidance.  I am open to whatever Gabi needs.  But right now, she is kicking some butt!

Her endurance is still a weakness. She can’t make it up more than 4 or 5 stairs before needing assistance and she still needs help when walking a long distance.  Dr. Cava doesn’t really have an explanation for this. Her peers with the same heart condition are running and riding bikes. Her sats are still between 87-94, which is great for her.  She continues on her 5 meds and even though Walgreens is a pain in my butt, all the meds are staying the same for a while.  She is still 95% G tube fed but Molly even mentioned that our next appt, we can discuss cutting down on some of the formula to try and get her “hungrier”!!

 

In September, we had 2 birthdays, in October, we had 1 birthday.  IMG_6677 IMG_0072 IMG_6815

In November, our beloved Connor was ordained a Deacon within the Archdiocese of Chicago. In May, he will be ordained a priest. We are so happy for him and so very proud of him! The picture below is Connor with his 11 classmates that were also ordained and the dude in the middle is Cardinal George! And the guys on the right hand side, are several of the bishops in Chicago.

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We have had football championship games and we played hooky one day to go to the zoo. There was a baby snow leopard with its mother and its mother was on high alert staring us down.  We got so close. It was awesome!

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Thanks for reading.

Much love  and peace,

Teri

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Visit from brothers and sister

We all trekked up from Arlington Heights this afternoon to visit The Gabs. The kids had made cards and collected various toys from around the house that they thought would cheer her up.

We arrived at the room just as three nurses were working with Teri to move Gabi from her bed so Teri could hold her and they could change the bedsheets. It made for a lot of commotion as the kids were super excited, Gabi was excited nurses were moving things and I tried my BEST to keep Thomas from tripping on the chest tubes that snaked across the floor in front of this feet.

Big brother and his sister.

Big brother and his sister.

Gabi was able to make it back to bed in one piece and was obviously tired from the adventure. Nevertheless Ethan Jr. helped her to color a little with markers and to play with a balloon.

Having not seen her for a few days I have to say she looks good, but VERY tired. Her voice is much higher and squeaky and makes her sound even cuter. She kept saying thank you to the kids for the toys they brought. It was heartbreaking to hear her exhausted squeaky voice straining to give thanks.

Teri said it was the most she had talked and certainly the first time she had smiled. All in all a good trip despite the traffic and storms on the way up.

The kids are now over at the Ronald McDonald House which they have been excited for since this adventure started. Then Teri and the kids are heading over to the Buchmann’s for some swimming and for Teri to get some much needed fresh air.

So far her chest tubes seem to be really slowing down, only around 10cc over the last few hours. This is great and we could be on schedule to get them out in the next couple of days. Her central line came out right before we got here, so there is major progress towards her becoming wireless. The faster these lines and tubes get out, the better. Each one is just a doorway for infection.

I grabbed a quick video of Gabi playing with her balloon. I hope everybody has a great weekend.

-Ethan

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Popsicles!

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