june surgery for ian

Hey, friends! Just a quick hello and communique that Ian’s having surgery today (planned/expected at CHOC), and we would love if your prayers could be covering him and the family today, and for the next couple of weeks.

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ginger’s instagram today

The recovery and his medical needs in the immediate future are a little more complicated than previously understood (before today) and i know this has probably been discouraging for them. I won’t go into details, if Ginger feels like doing so she will.

But there’s been worse to deal with! And if all goes well this could be Ian’s last such invasive procedure for the forseeable future, so prayers, prayers, please for the doctors and protection on Ian’s body!

here are a couple pictures of hanging out with Henry today…

making train tracks...where to start!

making train tracks…where to start!

Screen shot 2014-06-03 at 5.30.18 PM

photobombed by mousy

I’ll try to update again with a more thorough peek into how the boys and the family have been doing…very soon!

ian loves all the animals! just like his big brother.

ian loves all the animals! just like his big brother.

thanks for checking in, as always. ~cnp

all home!

Well, the family got home yesterday!

Ginger is now sick, and Ian & Henry are still sick and dealing with the messy effects of the stomach bug. Poor mom & dad!

Along with breathing treatments Ian is on steroids again. Last night when asked if they were hungry and ready to eat dinner, Ian’s response was an emphatic “yes,” while Henry simply responded, “I don’t like dinner.” Oh well!

Keep praying, everyone is exhausted and hoping things can go back to “normal” as soon as possible.

For maximum cuteness, click here to see the boys demonstrate the most efficient way to eat noodles.

twins with trains

twins with trains

Ian hospitalized, but stable.

The poor Adams family tried for what feels like the 100th time to take a family trip out to see Ginger’s family in Albequerque, and Ian became very sick. Here is Ginger’s summary:

“Ian has been hospitalized since yesterday (Saturday). He had been sick with a cough and runny nose that we had been treating with albuterol breathing treatments and he was acting like he felt pretty well. Our family had plans to take a trip to visit family in Arizona and New Mexico.

Henry seemed to be feeling worse on Christmas day in the evening when he started vomiting but he seemed to be doing well enough that we decided to drive to Phoenix as planned on the 26th. At that point, Ian seemed to be getting over his cold and was acting fairly normal. We spent the night at Ginger’s Mom’s house and took our flight to Albuquerque early on the 27th.

Ian started vomiting before the flight and once after we landed. Ginger’s dad picked us up and we made the 3 hour drive to Ginger’s Dad’s house. Ian was acting a little more clingy and by the next morning, he was acting lethargic.

We decided to take him back to Albuquerque to UNM Children’s Hospital. They saw us and initially planned to observe for 6-8 hours given his medical history, despite him saturating well on room air and lungs sounding good. Theydid a chest x-ray and started oral steroids to treat “viral induced asthma” (because of his chronic lung disease, his lungs are fragile and sensitive to virus irritations, altitude changes, temperature change and all of these things happened with our trip).

He does not have pneumonia, his lungs can react to irritation by getting inflamed and twitchy. A few hours of being in the ED, he started to need oxygen support, and more when sleeping. Today he was able to go without any oxygen, but desaturated when he slept, so they will watch him tonight and if he is able to sleep without needing oxygen support, they will release us in the morning. Our flight back is scheduled for the 31st.”

Caid helping out little bro Ian with  breathing treatment

Caid helping out little bro Ian with breathing treatment

The boys have had a few bugs over the past months and generally have been able to fight them off with some doctor visits and breathing treatments. So that’s been encouraging.

As frustrating as it is to have another attempt to visit family interrupted, I know Ginger & Joey are just happy that Ian appears to be stable.

Please be praying and thinking of them! I’ll update again as soon as i know more. ~cnp

a few recent pictures of the boys…

The family celebrating Caid's 8th birthday, and the twins' 3rd back in October

The family celebrating Caid’s 8th birthday, and the twins’ 3rd back in October

Ian hanging an ornament

Ian hanging an ornament

Henry's turn!

Henry’s turn!

...and big brother.

…and big brother.

good news!

Ginger writes:

Henry’s platelets continue to climb, and his NK cell function test was within normal range…So we are going home today!!

brother twins, at CHLA this morning

brother twins, at CHLA this morning (obviously they’re not identical, but if anyone ever wonders which is which, just look for ian’s chin, or henry’s hair)

Short post, but we had to let everyone know. There’s still a lot the doctors need to figure out, but it’s ALWAYS better to have everyone home.! ~cnp

brief henry update!

Ginger writes:

Platelets more than doubled today from yesterday, although still technically critically low.

Henry tested positive for RSV and the virus that causes Roseola, but my understanding is that doesn’t necessarily explain the extreme drop in platelets. We may be able to go home tomorrow as long as platelets go up tomorrow and the last send out lab comes back as normal.

Henry the kitty

Henry the kitty

Please be praying for a super boost in platelets! The family would so love to have everyone home, this has been an exhausting week in so many ways. Thank you!! ~cnp

Henry update…

again, written by our dear friend anna…

I had a chance to talk with Ginger tonight [last night, 14th] and wanted all of you to know how sweet Henry is doing.

Screen shot 2013-08-15 at 9.57.47 AMHe is feeling MUCH better!  He wants to go home, and of course his parents want him to be able to.  However, there are still a few issues that need to be resolved before that is to happen.   Henry tested positive for a virus that causes Roseola, which will generally clear up on its own unless (as in Henry’s case) there are other complications. Here is how we can continue to pray.

Henry’s heart rate, while he sleeps, is unusually low.  Upper 40′s to lower 50′s.  It is rather strange and they don’t seem to have a definite answer for it other than that he is still sick and is recovering.  We can pray that his heart will begin to work as an active child’s should.  Along these same lines, please pray for Joey and Ginger as they take turns sleeping at the hospital.  I think we all know how difficult it is anyway, but combine that with an alarm going off repeatedly throughout the night due to Henry’s low heart rate and you can imagine how worn out they must be.

hanging out with mama and Mousey

hanging out with mama and Mousey

Another alarming issue is Henry’s low platelet count.  His body seems to be recovering well at this point, but his platelet count is in the 12,000 range.  An acceptable count would be in the neighborhood of 150,000.  But Ginger told me that the last time they did a blood test on Henry when he was well, his count was between 300,000-400,000.  Hopefully those numbers help you to understand how low his count really is.  Again – it is odd that it should still be so low considering his improvement.  Please pray that this number would dramatically jump in the next 24 hours.  He will not be allowed to go home should it remain this way.

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So far, the tests that are being run to rule out HLH have been coming back normal.  There is one test still out that checks the NK (Natural Killer) cells – part of white blood cells.  It is rather important that this test come back with normal results.  Ginger was told today that if the results are abnormal, then hematology will recommend that they proceed with Henry as though he has HLH and begin “treatment”.  What they mean by this is that they would start Henry on chemotherapy and radiation and ultimately, a bone marrow transplant. A very drastic response to one test.

That being said, Ginger and Joey are not convinced that an abnormal test result is a absolute that Henry has HLH.  They would have to consult with many other doctors before that – and Henry is doing so well now, that it seems unlikely that  the test would be anything BUT normal.  But we also know that things have not gone “normally” for these boys from the beginning, so please pray for that normal result!

helping the nurse remove the IV tube

helping the nurse remove the IV tube

Caid and Ian

Caid and Ian

Please also remember Caid and Ian at home.  Caid began school this week, so it was a particularly difficult time for the family to be split in so many different ways.  Pray for a spirit of peace upon Caid and Ian as their routine and structure is in a time of upheaval.

Also ask for a huge measure of blessing and grace to be poured out on those that are stepping in to help care for them while Ginger and Joey tend to Henry and work.

Joey and Ginger are concerned that there could be some underlying complication with the boys’ immune systems that has not been found, or cannot be found due to the very little known about HLH.  There seems to be a pattern in their illnesses.  One that would indicate that the same “thing” is being triggered every time, causing the boys to react in the ways that they have every time they become very sick.  If this is the case, and something can be done, please pray for wisdom for these doctors.  That they would be able to see into this disorder, make sense of it, and be able to prevent these situations from becoming what they have.  Each time these boys get sick, it becomes a gut-wrenching guessing game for their parents of what to do, when to do it, am I just being paranoid?  May the Lord give them an abundance of mercy and clarity in these moments.

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I know that this is such a well-known and used verse, but each word in it speaks to their trials:

6    Do not be anxious about anything; but in everything, by prayer and petition, with thanksgiving, present your requests to God. 7 And the peace of God, which transcends all understanding, will guard your hearts and your minds in Christ Jesus.  -Phil. 4:6-7

So much anxiety surrounding the well-being of your children, anxiety about whether or not the doctors are doing the right thing, anxiety about whether or not YOU’RE doing the right thing, anxiety about their future.  But by prayer and petition – OUR prayer and petition, on their behalf – with thanksgiving for the lives of these two little boys, we make our request to God.  Knowing that He is able and willing to give a peace that passeth understanding – even when we question what is happening.  Rejoicing that He WILL guard their hearts and minds.

Thank you, to all of you.

In Him,
Anna

Prayers for Henry

I cannot thank you all enough for the prayers on behalf of Ian last month.  As you all know, he is doing very well, receiving continued care and follow-up appointments.

The reason for this post, however, is to let you know that Ian’s twin brother, Henry, has been admitted to the hospital as of last night.  He had been struggling for a couple of days with a fever, vomiting and fatigue that seemed to get worse as time went on.  Joey and Ginger took him in on Sunday evening to be safe.  The doctors are currently running a barrage of tests in hopes to pinpoint if there is anything that they might need to address.

big brother (and mousey) to the rescue

big brother (and mousey) to the rescue

If you are not aware already, Henry has NOT been diagnosed with HLH as Ian was.  They are, however, checking certain “markers” to make sure that what is going on with Henry is not indicative of HLH.  I do know that he was feeling a little bit better this afternoon, but will hopefully know a little bit more about any test results tomorrow.

I know that they count it as precious that each one of you loves them so very much to stand with them in prayer.

~credits to our dear family friend anna for writing this.