Warrior Update

Sorry I haven't posted in over a month, so here goes the update....

PNEUMONIA

Khyle currently has pneumonia. It got worse before it got better, we still have 4 doses of antibiotics to finish but we hope we are at the end of this little crisis. This has been the only illness since we left the hospital on June 17th so I am grateful for that and also for the fact that they did not admit it. A few rough nights at home but I much prefer keeping him AT HOME as long as I have all the equipment/meds to do the job right.

INSURANCE

We are unfortunately going through an insurance change. The new provider seems a bit inferior and we are losing our pediatrician for Khyle & Maya. The timing of the change created quite a lot of stress for me because I had to get Maya's yearly check-up and immunizations done so she can go back to school in one week. It cost lots of money I didn't have and now we are in a frantic hunt for a doctor who can manage Khyle and is in our network. I have a lead on a few people so will go and do some consultations. Still have not found providers in my network for medical equipment and supplies, so the search continues.

NEW THERAPIST

Sadly we have lost one of our favorite people in Khyle's chain of care--Melody our physical therapist. She moved to be with her family and we are devastated but we start with a new PT in 2 weeks. We are looking forward to another great lady who will fall madly in love with our little warrior.

PROGRESS

I do not know Khyle's current weight but we are certain he has gained weight. I think he is about 23 lbs (just a guess) but he actually has fat on his legs and his cheeks are chubby again. We are happy with the new feeding system now via pump. It works well and the weight gain is awesome. It is very expense to maintain though and so we hope we can figure out something manageable going forward.

Our PT did think she saw improvement in Khyle since the cranial surgery. She thought he was more cooperative & alert. She suggested that the next 3 months could prove tremendous growth for Khyle in terms of his physical and cognitive development.

MANY THANKS

In case we have not already thanked all of you who so lovingly helped us out this summer then I wish to say again that you were awesome!! So many of you prayed, made meals, gave us rides to/from hospital and showered us with love and encouragement. To our family at Rockville Assembly of God (RAG) who gave money, time and prayer, God's blessings on you for taking such good care of us. To my family and friends, thanks for praying, visiting, calling & just being there for us. Even though we were expecting to go to Children's for the cranial surgery it was very rough being admitted for malnourishment and spending over 21 days there, also having the big setback we did with the surgery was scary. Thank you for being there!

FUNDRAISING

In a few weeks Quincy and I will begin a fundraising campaign because the medical expenses, even with insurance, are tremendous. The insurance pays 80% so we have the 20% balance to pay on all hospitalizations. Also there are a lot of equipment & supplies not covered by our insurance. Please keep an eye out for that posting/email and be prayerful as to whether you may consider giving. But more on that later...

We are happy the boy is home, growing and succeeding. We are happy to be in this area where we are able to get such great medical care and we are thankful for our RAG & Fourth families who are God's arms around us. We miss our family tremendously and hope to see you soon, until then FB & email will have to suffice. Be blessed everyone and as always keep us in your prayers.

Fussy Boy

Yay the boy is 19lbs!!!! How great is that!! Surgery is still on and he is healthy. However he does not seem happy with me tonight. He slept on Granny Gran, who just arrived from Nassau & he talked to Daddy sweetly but for me, he just fussed and cried and fussed some more. I had to put him back in the bed & then he went to sleep. Gee, way to hurt my feelings little man.

Well we had a blessed time at church this morning. The congregation at Rockville Assembly of God (RAG) prayed for us & we were greatly encouraged. We are spreading the word to pray for Khyle's surgery on Facebook and have set Tuesday June 8th as a prayer day for him, so join us if you can. I keep wishing I could explain to Khyle what is happening and what is about to happen. I pray that God gives him peace & brings him through safely with as little pain as possible.

He is sleeping comfortably now and I hope to join him soon.

8.42 and Rising...

This is Quincy, posting while Suzette is signed in...

Khyle The Warrior and I spent the day snuggling in his hospital room. It was a day of quiet communion, and we both missed Suzette but - as men do - silently agreed not to mention it to each other. One of his nurses, Bea, bathed him, and couldn't resist once she saw his hair. Now, instead of his customary afro, Khyle is sporting a head full of cornrows, and rather than a Warrior, today one might be forgiven for mistaking him for a little gangster of love. He's only missing the terrycloth running suit, the Addidas and the gold rope chain to complete the look.

On the medical front, he continued to do well today, dramatically increasing his pee output and putting on even more weight. He weighed 8.42 kilograms at about 4PM, so that meant he'd put on weight even from late yesterday. At this rate, who knows where his poundage will end up? As Suzette noted, the diagnosis under which he was admitted was "Failure To Thrive:" it appears to me that he is indeed now thriving, and that quite well. The difference in his physique is visible to the naked eye, which makes my four eyes very happy, to say the least. The doctors have increased his feeds, and also have put him on a regimen that gives him a break in the feeding. This will help him learn to tolerate more food and to retain the calories thus ingested.

During his first break from feeding, I took him off the monitors and we went on a little galivant around Children's National Medical Centre. Then we watched Sam Stosur put it on Justine Henin (even though I was pulling for Justine) and we watched Rafa Nadal destroy the young Italian fellow. The French Open was fun, and we are both looking forward to watching Stosur try to beat Serena Williams: what a war that will be! Needless to say, he enjoyed the walk, and hanging out with some other children in the lobby of the hospital. They thought he was a girl because he's gorgeous, and he inspected them while they did jumping jacks and ran up and down. Then it was back to the room for more snuggling and snoozing.

I'm up again tonight, so we'll have more to say about it tomorrow I'm sure.

Thank you all for your prayers and support My little boy is amazing.

Two Glorious Pounds

As of last night, Khyle's new weight is 8.29 kg or 18.27 lbs!!! So his weight has increased 2 lbs from 16 to 18 in 2 days. It looks like the feeding & IV regimen is working!

This is good news because it suggests that he does not have any underlying medical problems causing weight loss. He just needs more food & liquid. We hope to talk to Nutritionist/GI specialist tomorrow & work out with our insurance buying a proper feeding machine. Yes this will be one more cable plugged into the boy, but we will be able to feed him larger amounts of Pediasure continuously for 24 hours.

Quincy will also give a report later. He stayed as the hospital last night, I will be going to visit the boys soon.

Keep up the prayers...God is good!