Fall PKU Appointment

 The day before Veteran's Day, I got the kids out early to go to their bi-annual PKU appointment downtown.  I worked for a half day, while G'ma Colleen got the kids off to school and then we met up at Rosauers to get some goodies for our favorite PKU team that flies into Spokane from Seattle two times a year.  The kids were bummed to be pulled out of school--how long will that feeling last?--but were great kids at their appointments and enjoyed THE SCOOP afterwards.

Christian's Great Day

This picture makes me smile.  This was the day that Christian and his family came over to draw blood together.  Christian has PKU, too, and is four years old.  He'd been having a lot of anxiety every month when his parents would poke his finger to get his blood levels tested, so we arranged to do the pokes together to try to help Christian.  Our two kids went first and tried hard not to whimper when their finger was poked, and when it came time for Christian to go, we remembered that Joshy had this Captain America costume upstairs and Christian LOVES superheroes.  So the shield and costume quickly was donned, making him the bravest kid, EVER!  Josh made me the proudest mama when he announced that he would let Christian keep the costume, that he was done with it.  And Christian's mom texted the next month that they had the best blood draw ever.  It was such a rewarding experience for both families...

Dr. Seuss Week

               Thing One--KAI                                        Thing Two--JOSH

These two crack me up!  Yes, Josh and Kai, your mothers once dressed you alike and thought it was the cutest THING!

Gracie had a fun week at preschool with Dr. Seuss activities--and she was so excited to have HER VERSION of "Green Eggs" and "Ham"--cottage cheese dyed green and green apple butter in a sandwich.  It was actually green eggs and JAM.  :)  When her teacher told me that the snack was coming later in the week, I was concerned that she'd feel different b/c she couldn't have the real eggs and ham snack made at school, but she just wrinkled up her nose, said she didn't care for those foods, and..."What can we bring, Mom?"  What a relief to see she's made of more confident, tougher, stuff!

Pretzels & Milk

...breakfast of Champions.

Mixing Milk...

I laughed today as I tried to find the kitchen counter under all of the FORMULA CONTAINERS and milk-mixing apparatus this PKU family shuffles. Even though we see it every day, I realize that most families don't have to reserve cupboard space (and garage shelf space!) for three different types of formula, nor do they have hand mixers or milk containers constantly drying in their sink and filling up the top rack of their dishwasher. :)

We have quite the "milk" routine at the Lochhead house. I don't know if we've blogged it yet, but Josh also has the mild (and rare) form of PKU that Gracie has. Jeff and I laugh that the odds are with us--our kids have a 25% chance of having PKU (thanks to a recessive gene we both carry) and we are 2-for-2 at this point! Now that Josh is weaned, he's joined his sister in the milk-mixing routine each morning. The Phenyl-Free formula that they drink gives them the protein that their bodies can digest, without the phenylalanine. We celebrated this new step by purchasing new milk-storing Nalgenes for the kids--purple for Gracie and blue for Josh.

Most PKU kids can't digest ANY phenylalanine, but our kids have a mild form of PKU where their bodies can digest SOME phenylalanine. So, we have only had to keep a few high-protein foods (peanut butter, eggs, meat, beans) out of their diet. So far we've been able to keep a couple of servings of dairy in their diets! We feel completely blessed to be this way--life without yogurt and cheese would be unbearable! :) And with Josh eating more solid foods now, we're finding that his case is very similar to Gracie's--each month when their levels are tested, we are quite relieved to find they have similar levels of "slightly elevated" phenylalanine in their bloodstream. Completely safe.

Another development in our routine is that Auntie Debbie, our good friend and NURSE, has been such a saving grace--she's been coming over to help with Josh and Grace's monthly blood-draws (finger pricks) so that our lives can be a bit less stressful! This is a HUGE blessing to us! She is quite talented with a finger poke--and our kids get spoiled by her attention! :)

All-in-all, we feel that we've been given a huge helping of grace to travel this interesting life path. Our genetic disorder is completely manageable, not life-threatening. (We won't talk about the non-diagnosed genetic disorders that others call "oddities"...ha!) And if you ever want to see canisters of formula jim-jammed creatively into cupboards (on a good day!) or sprawled across the length of the kitchen counter (on a crazy day!) come on over to our GRATEFUL house!

PKU Update

I realize that we haven't posted an update on Gracie's PKU in quite a while... It's probably because her case is mild--which is rare in kids with PKU--and we haven't had to make drastic changes in her life. Blessed! :) At this point--20 months old--the only foods we've kept out of her diet are meat, eggs, and peanut butter. This is a lot easier to do than we originally thought--we just never introduced these foods, and she hasn't really known what she's been missing! Her body is able to digest SOME phenylalanine (one type of protein)--so we still let her eat dairy--which is something most kids with PKU are unable to do. She gets most of her protein from a special formula we add to her milk each day. At this point, we have her blood tested once a month and adjust her diet--usually the amount of formula that's added to her milk--accordingly after the results. We've just started taking her blood samples at home instead of going in to the lab. All-in-all, we are pretty blessed to have such a mild strain of this genetic disorder. The other good news we have received is that our next baby has a 25% chance of also having PKU, but his case would be very similar to Grace's--mild.

We are very blessed!

(This is a picture of the yogurt container that Grace emptied, threw away, and promptly retrieved from the garbage to lick clean...)

Five Little Gracie Tidbits

5. Gracie loves to stand. And walk--with help. She wraps her little hands around her daddy's fingers and takes him all over the house. This week she found that the screen door has a window right at her level--she stood there for 15 minutes, talking to the window...

4. Squealing. Ear-piercing screaming is her new trick. We are NOT very big fans. No megaphones for her birthday, please. She's got her own, built-in instrument. We're just trying to TRAIN her skills...

3. We have Gracie's blood drawn every month to keep an eye on her PKU levels. This month her scores went up considerably, so we found out that we have to take meat and eggs out of her diet for a while and give her special formula to bring her levels back down. She's not in any danger, we're just bummed that she's having to be restricted in her eating.

2. She loves the word BABY. She stretches her arm across the room to point at the picture of HERSELF on the mantle and says, "Baby! Baby!" and wiggles with excitement. She also looks at the chair and says BABY and looks at her toys and says BABY and looks at her food and says BABY...

1. We're starting to sing "Happy Birthday" to Gracie so that she'll be used to it when she hears it in May. She likes ANY music and starts clapping whenever she hears a tune. And she does a little bounce dance that is quite adorable.

Gracie Update

A lot of our fears were relieved when we spoke to an expert from the PKU Clinic at UW. She has been looking at Grace's reports and has worked in this specialized field for over 20 years. She told us several things to keep in mind:

1. Don't worry. Our baby is perfectly fine--enjoy her!
2. Her levels are very low and have remained low. We can continue feeding her as we are!
3. Best case scenario: Her level of 3 declines over time. 2nd best case scenario: Her levels stay at 3 and she just may not be able to eat as much protein as the average person. Other possibilities: Her levels may go up as she starts to eat solids...we'll just have to keep an eye on her levels in the years to come.
4. More tests are being examined--we'll know more specifics in the weeks to come. We will probably go to Seattle to meet with the people at the PKU Clinic sometime after that.

Thank you all so much for your prayers. We really do think that this could all disappear with time, but know that if it doesn't disappear it is definitely manageable.

On a fun note, the lab at Sacred Heart felt badly that she had to go in twice on Thursday for different tests--blood draw, foot prick, urine sample--so they called us yesterday and said they had a little present for her because she did so well (she almost fell asleep during the blood draw!). Jeff stopped by the lab and came home with a teddy bear that is twice her size! She's pretty amazing! :) -LE

Trust...

The last thirty-six hours in our life has just been a glimpse into the trust we must have in our Heavenly Father if we are going to make it through this parenting thing sane. Yesterday around noon a nurse from our pediatrician's office called to inform us that Gracie's PKU test came back positive, and because it is a general panel screen another blood sample was needed for retesting. After giving blood and meeting with our pediatrician, we were told that we would receive the results today...after two phone calls from us, a doctor called at about six pm this evening to inform us that Gracie's levels were exactly the same on the retest. Her levels are just above what is accepted as normal (3 mg/dl). To give you an idea 1 mg/dl is desired, >3 mg/dl is when concern arises, upwards of 30 mg/dl is what our doctor would have expected to see if Gracie was in fact positive with PKU. He says at this point her levels are not causing any problems, but what comes next is determining why her levels are slightly heightened.

As parents, or nerves are heightened as well!! Thinking that something might be wrong with our beautiful Gracie, even if it is manageable, calls for great strength from God. We are indebted to those of you who have been praying for us, and would ask that the prayers continue as we continue to seek medical assistance. Ellie and I continue to remind each other that God is in control, and loves our baby more than we could imagine.